Thursday I was craving some fries from McDonalds, which is one of my safe foods due to my gastroparesis. So I placed a mobile order, I did curbside pick up, but it wasn’t letting me check in for pickup. So I went inside. The cashier was talking to me and I couldn’t understand/hear her. So I told her. Then the manager started talking to me. I repeated I can’t hear them. She started again. I yelled “I’m partially deaf, I can’t understand you.” Then she laughs! The manager laughed! There were several guys in the waiting for their food, one stepped up to help me. When I walked away, she laughed again! I was so angry and embarrassed, I was almost crying.
Masks have long been a challenge for those that are hearing impaired. Many have experienced horrible situations in being unable to communicate. This is NOT ok. This is stressful and honestly traumatizing. I have 30% hearing loss in my left ear and 40% in my right. I’m exhausted sometimes from straining to hear what’s being said to me by others.
Now you may think, what’s the big deal. Well the big deal is, for those in the hearing impaired community, reading lips is imperative to communicate. With lips covered, they can’t effectively communicate. Many won’t move their masks down, so their lips could be read. Many won’t write down on a pad of paper for the HI person, many make no effort to accommodate to provide effective communication. What is even more mind blowing is how often this is happening at doctors offices and hospitals. This happens way too often at doctors offices. I have told them, upon checking in for an appointment, that I am hard of hearing. I will not hear my name if called softly, or on the other side of the waiting room. Frustratingly it STILL happens! I had one appointment last year with an Ortho, I couldn’t tell you what was said. He wore two masks, and didn’t speak clearly. Again, this was AFTER telling him I’m hearing impaired.
The sad reality is, this is happening at an alarming frequency. We, in the hearing impaired community have lost valuable, necessary ways to communicate. This has left us reeling. This has left us experiencing frustrating, even embarrassing situations. The amount of times we’re ridiculed, ignored or absolutely no effort is put forth to communicate in a way in which we need is astounding. There’s countless videos on Tiktok of this happening, countless posts on Facebook detailing the same thing.
In all honesty, it’s disheartening.This is honestly ableist. Having experienced this over and over is emotionally draining. Today’s experience was completely unacceptable. It should NEVER have happened. It SHOULDN’T be happening to anyone! Struggling to hear so I can communicate, is that really acceptable? Is that really where we are? This is NOT about politics. This is about a community being left in the lurch with struggling to communicate due to masks. We need to find a way that doesn’t leave an entire community struggling to communicate. If you see someone struggling, please help them. Offer assistance. Work to find a way to communicate with them. Whether it’s typing on your phone, or writing it down. Be kind. Choose kindness and compassion.
We come to you for help. We come to you already scared, frustrated, anxious. We don’t need any additional added to us. What we don’t need is for you to medically gaslight us. That’s not acceptable. Not in any way. We KNOW that as a rare disease patient, or a chronically ill patient we can be complex. We already know this. We don’t need reminding. Many of us struggle with being heard. Unfortunately too many of us have been dismissed, belittled, ignored. Too many of us have been gaslighted by those that are supposed to help.
Medical gaslighting is term used to describe doctors or medical practitioners who blame a patient’s illness or symptoms on psychological factors, or deny a patient’s illness entirely, for example wrongly telling patients that they are not sick
This is prevalent in the chronic illness/rare disease community. So many have experienced. Oddly many have experienced this with neurology. Neurology seems to be the one specialty many of us experience this with. However, this does not just happen with neurology, but many specialists. So many tell us it’s in our heads, go to counseling, or we’re just looking for something to be wrong. We’re easily dismissed. This leaves us frustrated, confused and angry. Some patients have developed PTSD from the traumatizing experienced within the healthcare system. We experience negativity, dismissiveness and unacceptable behavior from doctors to the point we have developed PTSD.. That is extremely concerning. This is causing us to mistrust doctors, some even avoid them for years for fear of this reoccurring.
What prompted this “letter” you may ask? Well, I was referred to a neuromuscular doctor, I saw him about 2 months ago. He was great at the first appt. Said there were signs of ataxia and MS. I saw him again August 9th. He did a complete 180. Appt was less 10 mins, closer to 5. He said no MS, which is fine. I asked if my EDS diagnosis plus my collagen gene mutation could cause the muscle fatigue and such. He said maybe. Then…then he really upset me. He said “let’s not look for anything else to be wrong ok?” Not the worst to say but still awful. Obviously I don’t want extra diagnoses. However his next comment and note in my chart really solidified why I struggle with neurology as a whole. He stated at some point if surgical intervention is needed, a psych evaluation should be done beforehand. I have never asked for a surgery or test. I have never been through a surgery that was not absolutely necessary.
What?! Why? I’m genuinely baffled at why this is always what doctors fall back to. It’s insulting and so unacceptable. I posted my experience in several support groups. It was overwhelming by how many have similar experiences with not just neurology, but many specialties. Many specialties do this. As a Dysautonomia patient, neurology is one of the specialists to follow that diagnosis. Yet, many don’t want to, or they’re dismissive. Our symptoms are real. Our pain is real. Our concerns are real. It’s not all in our heads. It’s not just mental health or depression. Yes, we can develop depression and anxiety. However, let’s look at it subjectively. We’re chronically ill. We go to doctors to help us. We’re turned away, dismissed, ignored, told to go to therapy. How could we not develop anxiety, or depression? Perhaps BOTH are reactive to what we’ve experienced? Perhaps both are reactive to living with a life altering diagnosis?
Yes, I’ll say there is some depression. Yes there is some anxiety. However it is most often NOT the cause of our symptoms. Some already attend counseling in practice of mental health and self care. Not everyone with chronic illness is depressed. Not everyone with chronic illness has anxiety. You CAN be chronically ill and have STABLE mental health. It is possible. I am a strong advocate of counseling, and self care. A strong advocate of discussing mental health within the community.
We want help. We want to be listened to. Most importantly, we want to be HEARD. We want to be treated with respect, kindness and compassion. We want to work with out doctor as a team. We want to trust out doctors. We want to work together. We want open communication. If you don’t know how to help us, say that respectfully. Set your pride aside and think of the patient, of us.
Please hear this plea. It’s not just a plea from me. It’s a plea from the rare disease and chronic illness community.
Let’s work together to create change. Let’s work together to refine and improve our patient-doctor relationship. I have hope we can do this, together.
Two years ago I hated my body. A year ago, I still struggled. I almost lost an amazing partner because of my insecurities. I struggled with my self esteem, my self worth. I worked so hard to find what I love about myself, to find me. To love me. It didn’t matter if he told me 1000x how beautiful I was, I had to see it. I had to believe it.
I struggled immensely after two urgent surgeries in 2019 that left me with feeding tubes and a 4” scar down my abdomen. I struggled so much with self esteem, confidence and loving my body. I couldn’t see past them. Working with Emma and Lindsey from LuLi&Co, helped me to regain that confidence back. Thank you both for helping me to find myself, and to love myself again..
In January 2021, I had an urgent surgery to place a colostomy. I knew it was an eventuality, but it became a reality far sooner than I’d thought. After surgery I posted a photo of myself wearing a bikini (photo below) in an Ostomy Group. While most comments were supportive, quite a few were not. I was told I should be ashamed of myself for wearing a bikini. Ashamed for even considering wearing a crop top. That it was disgusting to wear such things and have my ostomy, or tubes on display like I was proud of them. In what should have been a supportive group, I was torn down. I was told I was disgusting, shameful. That it was the equivalent to having my butthole showing. Vulgar I know, but that’s what I was told. I was embarrassed for sharing a moment I was so proud of after spending years building the confidence to even wear a bikini. I cried. I let their words affect me. Being told by others in a group that was supposed to be supportive that it was disgusting, or something I should be ashamed of, is disheartening.
What bothers and hurts me the most, is how women are tearing each other down. There is so much negativity, judgmental and just harsh comments. Why tear someone else down? Why? If you don’t want to wear a bikini, don’t. however why tear down someone that is?? I am so immensely passionate about body positivity. Our young women see these comments. They see the judgment.. We’re letting them down, but shaming those that are confident, comfortable and accepting of their body. I want a young women with a feeding tube to feel confident in herself. to NOT fear what others will think, or say.
Emma posted about a project she was working on about body positivity. I jumped at the opportunity to be part of it. To show my vulnerability, share my story.. These photos below are a product of the project. The message is clear…
I have never hidden my struggles with my insecurities, I have been open and vocal about my journey to regain my confidence, to accept and love my body as it is. While wearing a bikini, or crop top to some might be weird or uncomfortable due to having a tube, or ostomy, I’m going to live my life for me. I will never hide who I am. I have fully embraced myself, and my body. I’ve become a fierce advocate for body positivity. I have worked to accept my body as it is. To accept me as I am. My tubes, scars and ostomy do not take away my worth, nor do they define my beauty. They are part of me, and yes I’m proud of them. Simply because with them, it means I’m alive. Words have power, but ultimately we are the ones that decide their power. I refuse to let the words of others impact or tear me down any longer. I may still have my moments, but I am not letting anyone dictate my beauty, or my worth. Neither should you.
To LuLi&Co, and Andrea Shea Photography, you have helped me to accept myself as I am. To see myself as beautiful. As strong, as amazing. Thank you so much. You have no idea what’s meant to me.
Dating isn’t easy. At any age, definitely not as we grow older. Relationships take work, trust, communication. You go through ups and downs. Breakups, marriage, divorce. There’s so many different things that go into a relationship, that make it work. Each one is unique, each partner is unique. Together, they’re a couple.
Being chronically ill isn’t easy. Dating while chronically ill is a completely different ball game. Relationships with one partner chronically ill can be challenging. I’ve seen far too many give up on their relationship, their marriage. They feel like a burden to their healthy partner, they feel unworthy. It’s easy to get stuck in that rabbit hole. To think we have nothing to offer. You do.
Having someone love you so unconditionally, they see past your diagnosis, they see past the worries, past the walls you’ve built. They see YOU. That is something amazing. Having a supportive partner can make a huge different in our own mental health while battling our chronic illness. Having their support helps lift you up, it helps you to not feel so alone.
Break ups suck. They’re hard, emotional, and at times absolutely devastating. I think it could hit those with chronic illness a bit harder. It could make us feel insecure, unworthy, not enough. When we end things without any real thought, or simply because we feel they’re better off, what are we really gaining? More importantly, what are we losing by doing that? Love, support, a partner? Why do we feel we can decide for them? Decide what they can handle, what they deserve? We make this monumental decision without discussing it with them. We break not only our hearts but theirs. If they want to be there, if they love you unconditionally… let them. Let them be there. Is it worth the heartbreak? Can you live with the regret of “what if”, if you end things? Can you look back years from then, and know you made the best choice? Will you ache for him/her?
I did that.. I left without a word. I gave up unconditional love. I gave up someone that loved me so damn much he put my health, my life before his. He was there from the beginning. Each appointment, 3 cardiac ablations, surgical follow ups, diagnosis, prognosis. He was there, and I walked away. I didn’t want to be a burden. I didn’t want him to resent me. This big, tough former military guy, and me.. Could barely walk, barely be upright. He deserved better. So I thought. So what did i do? I made the decision for him. I made the choice to walk away. With NO conversation of what HE wanted. Knowing he loved me. I broke my heart, and his by doing this. I damaged our bond, our trust beyond repair.
For 4 years I buried the pain. I buried the ache in my heart. The empty feeling I had. For 4 years I tried to convince myself I did the right thing. Then it all came crashing down. I checked an old email… and there were emails from him…So, I finally typed that reply to him… after 4 years. My heart pounded. Would he reply? Would he ignore me, as I ignored him. It took nearly 11 hours for a reply. After that reply, 3 hours after that we were on the phone. When I answered that call, it was emotional. It was instant tears. There’s no way to describe what I felt. There’s no way to describe what I felt for him. “Hey you”..was all it took to unravel the carefully constructed walls around my heart… “Hey you” was all it took, for every memory to flood me, for every emotion to pour into me, for every “I love you” to fly back into my mind. My world unraveled that night. But really..it unraveled 9 years ago when we met.. 9 years ago when I said “I love you” after he brought me donuts to my office, and I said it for the first time.
That night.. We talked, I mean really talked. Losing me nearly destroyed him, just as my losing him nearly destroyed me. That phone call shook my entire foundation. I cried, yelled, raged once we hung up. My mom held me on the ground as I cried, letting years of anger, betrayal, longing, regret and love out.. The rage, the resentment, the regrets I’ve held. I still hold. He asked me why.. why did I leave? This answer isn’t an easy one, but here it is.
I let my health be a part of the reason I walked away. How do you walk away from someone that means so much to you?? Let me tell you, it isn’t easy. It’s painful. It’s emotional, it’s rage, it’s overwhelming fear. I knew my health issues, weren’t an issue to him. He cared about me, and wanted me, regardless of whatever health issues I had. He was caring, loving, supportive. I’d never experienced that. I didn’t think I was worthy. I didn’t want to be a burden to him, I didn’t want to hold him back. So, I simply walked away. Hurting both of us in the process.
Since reconnecting in 2018, we tried to rebuild the connection we had. It was powerful. All consuming. Fire and ice. How do you rebuild what you had? How do you talk through the heartbreak, the distrust? How do you forge ahead? It’s a lot of work. We tried. We tried so hard. We talked about the future. Our dreams, our hopes. Unfortunately we couldn’t get past the broken trust. He couldn’t get passed the betrayal of when I left. He couldn’t let go of the pain, of the heartbreak and rebuild. Things went from talking marriage one day, to “I don’t know if i can do this”, the next. How do you process that? How do you cope with that heartbreak? Honestly? Sheer devastation. Realizing I ultimately caused this. Realizing my making that decision for him years ago resulted in this heartbreak. In twice the heartbreak for both of us.
Does silence mean break up? Does it mean he needs time? At what point do I decide whether to move on or stay just a little longer with a sliver of hope? Is it even wrong to have that sliver of hope? I have anger, a feeling of abandonment, hurt, betrayal. I want to cry, I want to scream. I want a conversation on why. Why make all the promises that he’d never leave, that he’d always be there, just to leave? Why let me have the hope, just to leave? Why wasn’t I enough? It hurt. I was lost, confused, unsure of what happened, why we couldn’t fix it. Some days I want to give in to the hope. Others I want to move on, find someone that will love me, encourage me, support me..How do you walk away from someone that you loved for over 9 years?
I know my worth.. Ironically, he helped me to see that. I know what I bring to the table. I know heartbreak. I know love. Trying to heal the heartbreak, the heartbreak. Healing the anger, healing the hurt. Healing the hole that was left behind. The sliver of hope wont let go, that sliver holds on. Your heart says wait, while also saying you deserve more. What do you listen to? How do you decide? It’s a hard decision. It’s heartbreaking knowing that “always & forever” came to an end. All the letters he wrote, our pictures together, the bottle of his cologne. Do you hold on to it all, or let it go? This is a battle, yet this time I know my worth. I know that i’m a Queen. I made a mistake in the past, I worked hard to make amends. I can’t force someone to love me, to be with me. I love myself too much to beg anyone, I deserve better than that..
Really though, a simple conversation about what happened. Just talking, like adults. That could ease the pain for us both. Though there comes a point, a time where you have to do what is best for yourself. It doesn’t mean you don’t love that person, It means you love yourself too. That you’re putting yourself first, that you know your worth. It isn’t always an easy decision. Most times we agonize over it. Over whether to stay or leave. Sometimes we feel like we were forced into the decision. Walking away isn’t easy, not when you love someone, though sometimes the decision is made for us.
Dating, relationships with chronic illness isn’t easy. Just don’t give up. Don’t give up love. Don’t make that decision for him. That’s not right or fair. Our health doesn’t make it easy, but please know you are not a burden. You are not unworthy. You are so worthy. Tip your chin up, straighten your crown, you are more than worthy..
We made is through 2020!! I feel like that is such an accomplishment! We’ve faced things we’ve never before experienced. We made it through. We made it to 2021.
My 2020 was riddled with appointments, treatment decisions, ensuring my nutrition was stable, and virtual school for my son. Which was an absolute disaster. So much happened, so much to work through, process and cope with. My son struggled immensely with the lockdown, he struggled with doing school virtually, his OT appointments stopped. It was hard. We always say how hard it’s been for us adults, but it’s been hard, if not harder for our kids. He’s back in school and thriving!
My 2020 rounded out with back to back procedures and prepping for a major surgery in January. Back to back port replacement surgeries.
2020 was the year that was trying to us all. Especially those in the chronic illness community. We struggled for care, we struggled with mental health. Some had procedures rescheduled, some had emergency surgery. Despite our trials, despite everything that tried to knock us down, we’re still here. We’re still standing. Recognize the accomplishment. Recognize how far you’ve come. Be proud of you, as i’m proud of you.
2020 was difficult. It tried to break us, it tried to take so much from us. Yet, we’re here. Standing. You are amazing, strong and brave.
Dysautonomia awareness month! What does this mean to me? It means i try to raise awareness for dysautonomia. Educate, and share my journey.
In 2013, I was diagnosed with dysautonomia. Now, there’s 15 different forms. I have THREE! Three different forms. 8 years ago it was so bad I couldn’t stand up without fainting. It was terrifying. I had to give my dreams of getting a Masters in Psychology. I was angry, scared, unsure of what the future was. All while being a mom to my son, a single mom at that. I’m immensely grateful for the support and help of my family during that time.
I didn’t drive for over 6 months. In 2012, I had to have a cardiac ablation due to a rare form of SVT. This led to my needing a pacemaker. My electrophysiologist decided on the Biotronik Evia DR-T. This pacemkaer is unique in that it has a special programming feature specifically for Vasovagal syncope, which i had. This has been an absolute godsend for me. My fainting has dramatically reduced, actually i haven’t fully fainted in years.
Adjusting to life with a pacemaker was overwhelming. Learning my do’s and don’ts. Come to find out, i’m hypersenstive to certain things and could actually feel when my ventricle lead was working. Unfortunately this meant that lead couldn’t be on, or it had to be set very very low. I’ve learned in recent years, this pacemaker has become key for alot of dysautonomia patients to regain some quality of life.
Post op I developed complications. I couldn’t walk. I nearly lost complete use of my legs. I had to use a walker to get around, even in my house. Wheelchair rentals when going somewhere. I started physical therapy but no one had any clue what was going on. It seemed to come in waves. I’d be fine for a few weeks, then “relapse” worse than the last time. Through a lot of hard work, and physical therapy my gait has improved. I still tire easily and now use a cane. Though, we are awaiting a wheelchair for bad days and long walking days.
I dealt with temperature regulation issues, GI issues, heart rate issues, headaches, fatigue. Oh man was the fatigue horrible. Doctor after doctor. Treatment trial after trial. It was overwhelming, seemed never ending. Eventually i’d had enough. The medication side effects were worse than the disease symptoms. After much discussion with my medical team, we decided to stop the medications, and trial IV fluids. My EP in Virginia had success with other patients doing this, so we gave it a try. Well what do you know, it was like a battery charger for me! I wasn’t as fatigued, heart rate wasn’t as erratic and my blood pressure stayed stable. This was amazing!!! So, it was decided to place a central line so i’d have constant access for fluids.
So fluids was my magic elixir! A picc line was decided. We placed it in spring 2014. It was honestly a horrible experience. in August 2014, I became very ill. Incredibly ill. Vomiting for hours, fever that reached 104.9. I was scared, and out of it. I don’t recall much of that particular night. My dad rushed me to the hospital. My primary doctor met me there. Labs taken, cultures done.. Picc line removed. I remember waking up the next morning. Apparently my team did not expect me to make it through the night. How terrifying is that to hear? It’s really hard. It turned out I had a septic infection. Dangerous and potentially life threatening. I’m immensely lucky we caught it early on. What caused this? Honestly, I feel it was the lack of proper protocol by home health. I am now a stickler for protocol. If you do’t know it, or can’t follow it, I will NOT allow you to touch my central line. This is non negotiable to me.
So here we are, it’s 2020. How am I? I have good days, and bad days. Every day I strive to make it a good day. To make memories with my son. I strive to live. By learning my triggers, by learning my limitations I was able to adapt my life and still live! Yes you read that right. I adapted to my limitations and still live. I choose to not allow dysautonomia to take my goals, hopes and dreams from me. I don’t want you to do that either. Yes dysautonomia is life changing, but it doesn’t have to be life ending. With treatment catered to you, learning your safe activities, you can still live. I want you to live. I want you to believe. I believe in you.
Stay true to who you are. Stay true to your goals, hopes and dreams. Please never give up.
Covid has changed life as we know it. Honestly it’s made things so much more complicated. It’s affected mental health, which is devastating. More importantly, this has affected our kids. Our kids are suffering so much. It’s heartbreaking.
Virtual learning was a complete bust for us. It was a nightmare. Trying to keep him on task was such a challenge. His ADHD makes it nearly impossible. I have so much respect for his teachers. They were amazing in finding ways to get him engaged and his work done. We did some online, and some in packets. It worked for us. In the midst of all this, I got a phone call about Mathew. See, we’d been on a wait list for an autism assessment since June 2019. It was a long wait. The facility that does his OT called and said they had an opening. Did we want it? YES! YES! We were able to get his autism assessment done in May. I was such a nervous wreck. I had all my papers, checklists i’d done, notes with my concerns. Now, they told me this test was about 2 hours long. He was done in under an hour. I felt defeated. I waited 3 long weeks for the results. Finally i get the call to schedule an appointment for the results. The day comes. I’m on edge.. She looks at me and says “Well Mama, you were right. He has autism.” Not only does he have autism, but he has major sensory issues along with it, and pica. To finally be heard after years of advocating. I cried. I cried that I had finally been heard and I could finally get the help for him! Resources were now available. Knowing this, that he’s autistic changes absolutely nothing. My son is such an amazing child. He’s so joyful, so kind, he’s just an amazing kid. For 6th grade we decided to homeschool him. It was not an easy decision, but it was the right one for him. So we found our curriculum and started! He wants to share our journey. He wants to give a glimpse of him, autism and raise awareness. So, we created an instagram account. Check it out!
So…. in April I was placed on TPN. It was a mess. I wasn’t tolerating my J feeds hardly at all. My labs were getting a bit worrisome. This caused my team to decide i needed temporary TPN. This would help stabilize my nutrition and hopefully stabilize my weight. This was important because i had lost about 40lbs to September to April. It was bad. My nutrition was so unstable. I left me weak. Unfortunately we learned pretty quickly that 2200mL of TPN 7 days a week, isn’t going to work for me. My kidney couldn’t handle it and caused some problems. We settled at 1700 ml. I tried TPN 3 nights a week, and enteral the remaining nights. I am unfortunately still struggling to get adequate nutrition. Eventually we’ll get it.
Now, I know things are stressful. Things are different, It’s scary, frustrating. I know dealing with all the changes is difficult. Please don’t let it overcome you. If you are affected mentally, please seek help. We all need help sometimes. You are loved, worthy and important.
“I’m fine.” ” I don’t want to bother you.” “Do you still love me?” ” I don’t mean to bother you.” “I’m spiraling”….
These phrases.. There are what i call my alert flags. These phrases can typically alert those closest to me that i’m not ok. Emotionally, mentally. These are my warnings i’m spiraling into depression.
While i’m lucky i can feel myself essentially sinking, there’s nothing i can do. Thinking positive isn’t going to help. Pretending i’m ok isn’t going to help. I’ll need reassurances from those closest to me. Especially my boyfriend. Repeatedly. I’ll be insecure, scared, worried. He’ll be patient, understanding and reassuring.
My mom will do her best to help me. To let me have my space, but be close enough if i need her. My son will want snuggles. He will cling to me and want to spend time together. He can sense the shift, and he becomes clingy.
I don’t drink. I haven’t drank in 12 years. I was heading towards the wrong path, and i luckily had friends and family that gave me a wake up call. I haven’t touched alcohol since. The consequences aren’t worth it. However, I wish people understood that it’s a conscious choice for those recovering.. EVERY DAY. I never speak about this. I’ve never publicly spoken about it. Perhaps it’s time. 12 years sober. It’s an amazing accomplishment.. It’s also at times a struggle. It’s one i’ll battle all my life. I will not fall, I will not quit. Too much to lose.
This… this is depression. This face hides pain, fear, insecurities, sadness, anger.. I pretend things are ok, until i can’t anymore. It’s so tiring to pretend. I’m tired of pretending. Why do I have to? Why do i feel the need to hide that which i struggle with:?? Stigma, that’s why.. I’m so tired of the stigma. I’m so tired of pretending. I’m tired of feeling embarrassed of it, tired of feeling like i’m not enough.
Depression sucks. It’s soul sucking. When my spiral starts i can feel if it’ll be mild, short, long, bad. I haven’t hit a dark spiral in years, however i feel it.
What triggered this you ask??? Possible Infertility. See I’ve been battling endometriosis since i was 15.. I’m now 34… That’s a long time. 6 surgeries, including an salpingo-oophorectomy. Which means my right ovary and tube were removed. Well in the last year my pain has worsened. The treatment? Lupron Injections or Hysterectomy. If i do lupron, this buys be time. Then, maybe in the future I can do IVF. Devastation. Anger, grief, despair. This is what i felt listening to my doctor telling me this. What if i miscarry? What if no IVF cycles work? What if I can’t safely carry? What if it’s twins? Can i cope emotionally if i miscarry. Those closest to me don’t think I could.. I don’t think i could. This is heartbreaking. Infertility is heartbreaking. No one discusses the emotional aspect of infertility or even endometriosis.. Why???
Why is mental health not talked about? Why is it so taboo? Why do we suffer in silence or alone? Why can’t we be honest? Why can’t we have a squad we can turn to? Why do we not do better? Do you check on your friends? Do you know them well enough to know if somethings wrong, despite them saying everything is fine?
Check on each other. Build a community. You matter. I see you.
Body Positivity, Self Worth, Depression, Insecurities, Counseling.. Why are these words, these phrases so taboo in the chronic illness community. Why are these barely talked about? Is it supposed to help us by not acknowledging these happen? That these can affect us? It doesn’t. It actually hurts us. Positivity in general seems to be ridiculed in our community. Why?
I’m in my 30s, I struggle with insecurities and body image issues. I’ve been very vocal about my struggle. Yet so many still hide theirs. So many still don’t acknowledge it. Some ignore it or think they’re taboo to talk about. I have struggled tremendously for the last year. Since getting my feeding tube, i’ve struggled to accept my body as it is. Scars, tubes and all. So many others have tubes, central lines, ostomies, scars, medical devices. So many others struggle with insecurities, yet it’s rarely ever discussed? Why? Why is this so taboo? Why is there not more of a network, more of a community lifting each other up?
If we as grown women struggle, what is this doing to our young women in these communities? What is it doing to them to see absolutely no one speaking about these struggles? Seeing no one like them out there blasting beauty standards to raise awareness and empower others? Why is there really NO ONE out there doing these things? Showing their body acceptance, showing their vulnerability? I’m not sure why, but it’s motivated me and empowered me to be that someone. Someone has to speak out. Someone has to start something to show body acceptance and positivity. Someone has to show body positivity to these young women, young men, anyone struggling that feels alone in their fight.
There seems to be a struggle with body positivity. We are letting others define us, define beauty, define our worth. We are letting our diagnoses, tubes, ostomies define us. Letting them define us as unworthy, unattractive. Body positivity is so important. It’s so important to lift each other up. It’s so important to acknowledge these topics, these struggles and discuss them. We have let what society has deemed “beautiful” affect us in such a negative way. We have let others decide whether we fit into a mold or not. Guess what, we don’t. That’s ok! We don’t have to. We’re not made to. Our beauty and worth shouldn’t be based on what fits a mold. Let’s break that mold.
I’ve struggled with this so much. It affected me deeply, it affected my relationship immensely. Counseling helped, friends helped. What really helped was someone told me: “Who cares what others say is attractive? Who CARES?! If you feel it, then you feel it! Stop trying to fit into society. Stand out. Stand up for yourself.” I remember sitting there, taken aback. Then i thought about it. They were right. I had let others’ words, others’ views affect me so much, I couldn’t see my own beauty, my own worth. My self esteem didn’t improve overnight. Goodness no. It took months of work. Months of positive self affirmations. Months of talking about my insecurities to really start to shed them. Start to being the key word. It’s a process, and ongoing process. Every day is a small step forward.
Depression is also another struggle. I have struggled with depression for a while. Sometimes it goes hand in hand with my insecurities. However, this isn’t discussed much in support groups. It’s almost like we should be ashamed of it. Absolutely NOT! Never be ashamed of your story. Never be ashamed of your struggle. I refuse to be ashamed of it. I refuse to hide it, ignore it, or pretend it doesn’t exist. I can’t. Why lie? Why is this such an issue to discuss? I don’t understand it. Depression happens, it happens when dealing with chronic illness. How could it not? It’s hard to adjust from one life, to this “new” life. It’s like grieving. You’ve lost who you were, now you’re struggling to find who you are, and who you’ll become. It’s ok to be angry, hurt, upset, depressed. It’s ok to feel emotions. My only advice, don’t let them control you. Don’t get so lost in them you give up living. Please, if you feel that anger, that hurt, that overwhelming sadness, reach out to someone. Reach out to me. I’ll listen as you vent. Reach out to others, reach out. Just know there’s someone struggling similarly.
It’s become my mission, my motivation to help others. To empower others to see their beauty, their worth. I’ve posted several blogs on this. I took it a step further and have participated in photoshoots. Creating powerful images that show my strength, my motivation, my beauty. These photos weren’t easy to do, it was scary and nerve wracking. What kept me going and motivated was that I was determined to LOVE MYSELF. I was determined to see MY worth, my beauty. My tubes don’t take away from it, they don’t take away from my strength, from my worth or my beauty. They do not change who I am at a fundamental level. What they’ve done is give me strength I didn’t know I had. They gave me courage. They gave me passion, and desire to help others. They gave me purpose. They have motivated and empowered me to do that for others. To show others their beauty, their worth. My tubes in a way gave me freedom. Freedom to knock down beauty standards and create my own. Freedom to strive for goals, freedom to find my passion and help make changes. Freedom to love me.
These “taboo” topics need to not be so taboo. These topics need to be discussed, need to be acknowledged. We as a community deserve more. We deserve love, happiness, goals, hopes and dreams. We are worthy. We are absolutely beautiful. You are warriors, you are fighters. Never give up. If you feel like giving up, know you have a community of warriors behind you to lift you up, to lend you strength. We won’t let you feel alone in this battle.
March is Endometriosis Awareness Month.. So let’s talk about it. What Exactly is it?
Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Mayo Clinic- Endometriosis
Now that we know what it is, let’s talk about it. I was diagnosed with it at 15/16. I was told I would probably never have kids. I remember sitting in the doctors office, the doctor telling me at 16, I’d probably never have children. I remember feeling so heartbroken, angry and confused. Why? Why was this being told to me. I didn’t understand at the time. No one really explained any of this to me. Soon i’d find out just what it all meant.
I had been rushed into emergency surgery in 2003, I was 17 years old. I had an ovarian cyst that had ruptured. While in surgery they removed my appendix, since most doctors were dismissing my pain as appendicitis. This surgery started what would become the “norm” for me. Another surgery revealed I was at Stage 4 at 18 yrs old. Unfortunately this wasn’t documented well by the doctor then. All we knew was that it was “everywhere”. We tried Lupron Depot, birth control. Various treatments to manage my symptoms and pain. Which just seemed to worsen each month. Lupron depot made it so I no longer had a menstrual cycle. This way they could manage the pain a bit better, unfortunately this led to other side effects from this medication, which is actually classified as a Chemotherapy medication. Here I was 18-20 and in menopause, on “chemo”. My life consisted of painful periods and doctors appointments.
My mom and I began to research. We found an amazing team of doctors in Atlanta at the Center for Endometriosis. I submitted a lot of medical records, and received word I would be taken as a patient. So off we went. Another appointment. Another doctor. This time though, we had hope. I was going to the best of the best. Little did we know just how things would go.
The consultation was overwhelming. I was basically informed i’d need another surgery. We prepared, we made plans. Traveling back and forth from South Florida to Atlanta wasn’t easy, but my mom made it happen. I was 20 years old, supposed to be in college and my periods were so bad I couldn’t function during that time. I remember my mom and I having the discussion. Me saying, “don’t let them take everything. I want a chance to have a baby later in life.” We expressed this to my doctors, Dr. Sinervo and Dr. Albee. They were aware of my fears, my anxieties, my desire to be a mom. They assured me they would do all they could. That day… that day is forever etched in my mind. Waking up in my hospital room. My mom sitting there, waiting for me to come out of the anesthesia. I looked at her, saw that she’d been crying. I asked her, “I lost them didn’t I? You took them out?”. I screamed, yelled and cried. Not only out of pain but heartbreak. She held me as I cried, as I mourned the loss. It may sound silly to some, but to me it was heartbreaking. She told me my entire right side was covered in endometriosis. The worst case they’d seen in someone my age. I had it on my right ovary, fallopian tube, intestines, pelvic wall. It was in a sense everywhere in my pelvic area. My mom had to make the decision for me, she had to make the decision to remove organs. Make the decision for her 20 year old daughter about her future. She agreed with my surgeons, remove the right side. So at 20 years old I had a unilateral salpingo-oophorectomy. This means, my right ovary and fallopian tube were removed. They did this to remove the endometriosis, to buy me time.
I then had to have a LEEP procedure due to pre-cancer cells found on my cervix.. Then.. then a miracle happens.. I end up pregnant in 2008. It was a shock, lots of crying. For 9 months there was no endo pain. No hellish periods.. It was glorious!
My son is now 10, he’ll be 11 in April. I’m 33 and I still battle endometriosis. I’ve battled it for 18 years, I’ve had 6 surgeries in total for it. My last one was in May 2018. They found two endometriomas in my left ovary. Once again my doctor did all he could to give me a chance to have another child. I’m once again at Stage 3. We’re considering reaching back out to the Center for Endometriosis Care. I need another surgery, however after 8 abdominal surgeries, they’re waiting until it’s absolute necessity. I’ve had severe scar tissue. Scar tissue and adhesions on various organs, in various places. Scar tissue that made placing my feeding tubes, very difficult. It turns out the severity of my endometriosis has created quite the problems in my pelvic area. Intestines are fused together, bowel issues, bladder issues. Things you wouldn’t think about endometriosis affecting, but it has far reaching consequences. Even with my J tube, there’s damage from my endometriosis. They’re saying “frozen pelvis”. It’s horrific to realize just how damaging endometriosis is, and how little it’s explained.
I’m in pelvic floor physical therapy to help with various symptoms from my endo. I have trouble going to the bathroom, both #1 and #2. This is being attributed in part to my endo. Horrific menstrual cycle pain. Every month i’m out of commission for a few days. I’ve tried birth control, sadly they just make my cycle last for weeks, which I can’t cope with. Pain with intercourse, pain with bowel movement, pain with movement in general at times.. These are things rarely discussed or acknowledged by some doctors. Things that are often dismissed. I’m hopeful that Pelvic Floor PT can help, if anything, may be it can help with going to the bathroom. Or help with the pain. Even in some small way would be appreciated.
Knowing i’m running out of time, knowing that each month my pain and periods are absolutely horrendous, knowing I need more surgeries for my endometriosis, it gets to me. Sometimes I debate if it’s time for a hysterectomy. I begin to accept that fate, then it becomes too overwhelming for me. Too much, too soon. I know that’s my eventuality. I know that is what I will end up needing, but how do you mentally prepare for that? How do you mentally prepare for no longer being able to conceive? It’s not easy. In 2019 it was discovered I have a hydrosalpinx. Meaning my only remaining tube is blocked. I have to see a fertility specialist to see just how blocked. I haven’t prepared myself for that yet. I can’t determine which would be easier, just doing the hysterectomy and giving up, or trying with the fertility doctor, and having hope. How do you make that decision? It’s incredibly difficult to make.
The emotional damage from my salpingo-oophorectomy was immense. I felt like less of a woman. I felt broken, damaged. I wanted to be a mother, and here i’m facing that I would probably never be a mom by natural ways. Depression, anxiety it was there. I had to work through the pain, not just physically, but emotionally as well. That’s what no one tells you about endometriosis. Yes physically the pain is unbearable, but emotionally, it’s unbearable at times. No one talks about the mental and emotional aspect of living with endometriosis. I’m not sure why, is it taboo? It needs to NOT be. It needs to be discussed. Women struggle with both aspects of pain. Let’s be there for them. Endometriosis is hell. It’s physically and emotionally painful. It robs women of their joy, their lives, even motherhood.. their hopes of motherhood are dashed at times due to their pain, or severity. It can affect relationships. It can damage them. We feel inadequate. We wonder why our partner stays, we wonder how a new partner will feel when they find out you may not be able to conceive. Don’t push your partner away. Communicate your feelings, your fears with them. Lean on them. Let them help you face this.
The feeling of being unworthy due to being infertile, or due to the struggle and pain with your endo. The feeling can be so overwhelming, so soul crushing you can’t breathe. You scream; “Why”, you beg and plead. You try to grasp this, try to grasp how this happened. You feel alone, broken, scared, angry. I assure you, you’re not alone. You’re not broken. You’re not less than, you’re not inadequate. You’re not unworthy. It’s ok to be angry, it’s ok to be scared. You’re worthy of love. So damn worthy. Just know you have a community of women behind you lifting you up in your time of pain. We are here, we will help you shoulder this. We are a sisterhood. We are a community. We are fighters with hope for a cure.