Navigating a New Diagnosis, Invisible Illness, and Feeling Overwhelmed

Posted by MarleneViola @marleneviola, Aug 7 9:15am

I’m still trying to navigate what it means to live with an autoimmune/connective tissue disease, and honestly, I’m finding the whole process a lot more emotional than I expected.
I was initially diagnosed with Mixed Connective Tissue Disease, but now we’re also looking into Ehlers-Danlos syndrome and trying to understand what else may be contributing to everything I’m experiencing. I’ve been going through what feels like hundreds of tests through Mayo Clinic. I’m incredibly grateful for the care I’m receiving there—they have been absolutely amazing—but at the same time, it is a lot to process. Sometimes I feel like I’m constantly waiting for the next test, the next appointment, or the next piece of the puzzle, and it can become overwhelming.
One of the hardest adjustments has been realizing that I just can’t do things at the same pace I used to. I’m slower than everyone else now. I don’t tolerate heat well, I get exhausted much more easily, and there are times when I have to say no to things that I genuinely want to do. It makes me sad because I don’t want to disappoint my family or friends, and I don’t want them to feel like they have to change their plans because of me.
Then there’s the invisible illness side of it.
Most of the time, I probably look perfectly fine to someone who doesn’t know me. But what they don’t see is what’s happening inside my body. I’m 52 years old and sometimes I have to park in a handicap spot because walking a long distance in the Florida heat can make me extremely sick or even cause me to pass out. I get out of my Jeep looking “normal,” and I still feel embarrassed sometimes because I wonder what people are thinking. There’s nothing visibly showing them why I need that parking space.
I know I shouldn’t feel embarrassed about using something that helps keep me safe, but accepting that I need accommodations at this point in my life has been harder emotionally than I ever imagined.
I also tend to keep a lot of what I’m going through to myself. I don’t want my family constantly worrying about me. I don’t want every conversation to become about my health, and I definitely don’t want to feel like I’m always complaining. So a lot of the time I say I’m fine, keep my mouth shut, and deal with things quietly.
But the downside of protecting everyone else from it is that sometimes I feel like I’m going through all of this by myself.
I’m trying to learn the difference between listening to my body and giving up, between asking for help and feeling like a burden, and between accepting my new limitations while still holding onto the person I’ve always been.
I’m hoping some of you who have been on this journey longer can tell me how you navigated this stage. How did you adjust emotionally to your diagnosis—or to not even having all the answers yet? How do you explain your limitations to family and friends without feeling guilty? How did you become comfortable using accommodations for an invisible illness? And maybe most importantly, how do you stop feeling so alone in all of it?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

momac59 | @momac59 | Aug 10 9:06am

In reply to @pm56 "All my life I couldn’t understand why I kept getting sick - it was almost as..." + (show)

@pm56

All my life I couldn’t understand why I kept getting sick - it was almost as if I didn’t have a fully functioning immune system … fast forward to my thirties where my back, shoulders and hips hurt so badly I couldn’t get out of bed. I’d run low grade fevers, and then the serious illnesses began one after another that no one could pinpoint. First came an RA misdiagnosis, then an axial spondyloarthritis diagnosis, psoriatic arthritis, and then I was placed on steroids while we trialed different biologic drugs. All leading to a hospitalization last year during an especially brutal steroid taper that revealed steroid myopathy, adrenal insufficiency, a clot in the brain and dermatomyositis.

I too look ok - except I’ve currently got a torn shoulder (thanks connective tissues disease!) so I’m in a sling and from the myopathy, at 58, I now need a walker. I can’t walk much and I find the fatigue crushing.

Someone who asks something of me that is too much (who maybe doesn’t realize my limitations), rather than just say “no, sorry” I tend to reframe the ask … if they want to know if I’d like to go shopping and then dinner, I simply say that the walking will probably be too much for me, but I’d Iove to meet them for dinner after they’re done shopping. I used to do a lot of cooking for the family holiday meals to contribute - now I order a shrimp cocktail from the fishmonger and a charcuterie board instead of spending days leading up to the holidays cooking. I’m figuring out ways to participate so I still feel like I’m contributing, even if it’s not in the way I used to.

I still don’t technically have a diagnosis as I’ve developed neurological symptoms now that don’t fit with any of the diagnoses so I’m UCTD currently. I think that’s the hardest for me. It always feels like we’re behind the 8-ball, never in front of it. I’m currently on Rituxan, Methotrexate, Medrol and SCIg - and I’m still not sure this is going to be it, because as I’m tapering on the steroid, my body is starting to ache more.

I’ve become comfortable using the accommodations because I’ve reasoned with myself “What are the alternatives? Falling?” I’ve had enough falls and I don’t want anymore. I don’t really care what people are thinking and you shouldn’t either. They’re not the ones that are going to wind up in the ER - we are!

I try to deal with “the conversations” with as much humor as possible. My friend asked me last week how I was feeling and I responded “Not bad! I have a sky diving session later today. Wanna come?” We both laughed as she knows I can hardly move. Then I filled her in on my week’s SCIg shenanigans and what an asshat the neuromuscular doctor is. Everyone is different, but I arrived at the conclusion that nobody wants to ask me how I feel and listen to me complain endlessly every week. I save that for when things are really too much and I am truly overwhelmed. You shouldn’t have to pretend you’re okay if you are having an especially bad day or if you got distressing news … but if nothing has changed and it’s the same - I don’t know how complaining about it all the time makes it any better. I have a friend who does this and I can’t spend longer than an hour with her for this reason. I can only take her in small doses lol.

My best advice is find something that you’ve always loved to do and can still do, even if you have to modify it to feel connected to who you used to be. For me that is cooking. I can’t do the large scale cooking for 20+ people like I used to do, but I can cook on a smaller scale and still do when I’m up to it and just ask for help with moving the heavy pots or draining pasta etc. It’s my mindless happy place and reminds me of the better times in my life with my husband and children.

I hope that you’ve found a good drug regimen that is helping with your symptoms. A therapist specializing in chronic illness may also be helpful in the beginning as you start navigating this journey. It gives you an outlet to vent that isn’t your family and friends. Best of luck. Pauline

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@pm56
Just had to tell you how much I like your attitude! For all you have to deal with your sense of humor comes through. It’s inspiring! I, too, use my humor to cope & try & find things to smile about but on my worst days it’s hard. Sometimes I just have a quiet day, telling myself it won’t always be like this; I have had good days in between as well. Those are the days I go to my comfortable place & do some enjoyable artwork. I can get lost in that & feel good about what I am creating. The process is kinda like meditation for me. Like you said, find something that you enjoy that reminds you of who you used to be & that you are not just your disease. For you it’s cooking, for me it’s art. I am grateful to have that talent & that it still is so gratifying for me.
Take good care & thanks for sharing!

pm56 | @pm56 | Aug 10 10:09am

In reply to @momac59 "@pm56 Just had to tell you how much I like your attitude! For all you have..." + (show)

@momac59 thank you for taking the time to connect! My mother used to say if you don’t laugh you cry. And it’s true. There’s plenty of days of crying, so I make an effort to make space for laughter. Art is a wonderful way to loose yourself too. Enjoy and make the most of it. It’s easy to forget that a diagnosis and long list of symptoms doesn’t always have to define us 😊

loriesco | @loriesco | Aug 10 7:12pm

@marleneviola you are not alone! I think a lot of us have things as we go through life. Some diagnosed some remain undiagnosed. Some people are just more sensitive than others so some of us feel more than others. Some of us are bothered more than others that we can’t meet our own expectations of ourselves. I am very lucky that I always have more that I want to do than I have time for and it doesn’t involve other people. I am very happy by myself and it’s a good thing because I spend a lot of of my time working by myself. I believe that everything happens for a reason. Maybe you will find yourself through this that you believe is a disadvantage in your life. Maybe it’ll be character building. Learning how to accept ourselves with Grace is an important part of life no matter what stage we are at in our development.🙏🏼💐💗 give yourself the gift of patience!

MarleneViola | @marleneviola | Aug 10 11:24pm

In reply to @loriesco "@marleneviola you are not alone! I think a lot of us have things as we go..." + (show)

@loriesco Wow! This was such an amazing response. Thank you. I felt this in my soul.

donna2008 | @donna2008 | Aug 11 7:38am

In reply to @celia16 "@donna2008 , It’s Hydroxychloroquine. I’m now on maintenance dose. The results were quite remarkable. I can’t..." + (show)

@celia16 thank you! I am presently taking hydroxychloroquine too. For awhile I was taking 200mg every other day, now taking everyday. It has helped with the pain and swollen joints, but I also started Leflunomide...been taking for 1 month now. Seeing my rhumetogist on Thursday to discuss my blood work. Hope you are having a good day today!

celia16 | @celia16 | Aug 11 4:24pm

In reply to @donna2008 "@celia16 thank you! I am presently taking hydroxychloroquine too. For awhile I was taking 200mg every..." + (show)

@donna2008 , Hey, you too! I saw my Endocrinologist today and she thinks I’m feeling relief since the hydroxychloroquine treats inflammation. She was happy for me and this confirms what I suspected. Also, I may have the option of going on a tiny dose of GLP1 later this year. It also treats inflammation and helps prevent cardiovascular issues. So….a lot to consider. My labs were awesome. So, I’m feeling good. Overall it was a very good day. So grateful for those!

bb03 | @bb03 | Aug 12 9:45am

I understand where you’re coming from. It’s hard to be me too! I have issues with thyroid, gut, arthritis severe and severe allergies and absorption issues. No BP, Kidney or Diabetes but the things that cause great thorns in your flesh and on top of that allergies severe, autoimmune things, and all my drugs are tier three drugs and out of pocket. Even my hormones are bio identical because I don’t absorb. I am a retired medical professional and so I know how to stay on top of my medical issues so I don’t go under. It ain’t easy!!!! I am 66 and worry about as I get into my late 80’s and 90’s if God lets me how will I manage my health. It’s complicated now. It’s like the worry of someone who has a handicapped child and they worry who is going to take care of them after they can’t or pass. I ask God to heal me almost daily, I’m thankful I have enough money to pay for these special meds and the mental
Ability to take good care of myself at present. I thank God that he is God and able to provide in every way for me. My quality of life is excellent because I live in the good ole USA which not everyone has that privilege. So all said be kind to yourself, know that Jesus loves you and that he knows your struggles. I will pray for you. 🙏🏻😊

jerce | @jerce | Aug 12 7:58pm

There is the challenge of autoimmune illness and worry, on the one hand worry about what other people think.

I hope you will adopt an attitude about what other people think. For example, when you shut the door to your Jeep, you could think, “ I WISH that someone would say something in judgement! I will blow them away with the following query- I am managing the following health issues. What would you do if you had this struggle?

lablife10 | @lablife10 | 3 days ago

YOU ARE NOT ALONE. There are so many of us out here that could have written your exact post, and signed our names to it. In 2024-2025, I was diagnosed with Seronegative Sjogrens, Seronegative RA, lichen sclerosus, Eosinophilic Colitis, Duodenal Intraepithelial Lympohcytosis, Mast Cell Activation Syndrome, Hereditary Alpha Tryptasemia,. In 2026, Primary Hyper Parathyroidism. I underwent a Multi-gland parathyroidectomy likely from all the autoimune/inflammatory activity that has left me with subclinical hypothyroidism, severe osteopenia, severe polyarticular osteoarthritis, and requiring neurosurgery to stabilize my spine, along with all the lost teeth, fatigue, joint pain etc that go along with all of this, after covid infection/vaccination. I am not a anti-vaxxer or conspiracy theorist, just one of the small percentage of. people with a preexisting genetic condition, and propensity for autoimmune diseases that this perfect storm of events , set off this explosion of autoimmune/inflammatory tsunami that catastrophically changed life as I knew it; world traveller, daily gym goer, long distance back country hiker, soccer coach, active grandparent, artist, carpenter, with seasonal allergies and an inhaler; to completely debilitated, o the couch for 2 years, and now on 16 pills a day, and 3 biologic injections monthly, and exercise consisting of it I can get to the mailbox and back. Depression. check. Isolation, check. Guilt, check. misunderstood, check. Everything you described is my life too; you could have written my story.
The, 'unseen' diseases are the hardest, because people look at you and think you are 'fine' . I don't know how many times I have gotten out of my car, and someone has seen disabled license plate, and shook their head, how many times I have cried because I couldn't hold the knife to chop , or have the energy to stand for 30 minutes, to cook my husband a omelette. Being an amateur chef, cooking was a love language, and great joy of mine in may former life. I couldn't coach my grandkids soccer team anymore, much les have the energy for what had become frequent sleepovers, or the spur- of-the-moment hikes with my husband, EVERYTHING about my life changed. when people can't SEE the problem they assume there isn't one, or that it can't be that bad. Much less KNOWING something is wrong with your body, and trying to get providers to listen when standard lab work says otherwise is beyond exhausting, much less with the siloed, 15 minute appointment time corporate model healthcare has become. How does anyone diagnose anything in 15 minutes while they are reviewing your chart, and trying to chart the visit at the same time? (This is coming from a retired nurse). So, I'm validating our emotions, your grief, your frustration, and all the things you talk about. Your story is many of ours, and you are NOT alone, Don't give up. It's HARD to embrace your, 'new reality', its HARD to say, 'No', its HARD to be subjected to what others think, its HARD to continually advocate for yourself with providers, but you can do it, Grieve what is past, move on and embrace the joy, happiness, and positivity where you can find it, Focus the energy you have on THOSE people and things, Seek out platforms like this to find, 'your people', who understand, so you don't feel so alone, and understand sometimes a little, 'pity party' is ok; we understand. Hang in there.

orest | @orest | 2 days ago

The way I explained it to family and friends was to ask AI to write me a sample letter explaining my illness. I then put it into my own words and emailed and mailed this letter out. People, even family and friends don't take the time to read about an illness and this letter did it for them...at the end I told them that if they had any questions to go ahead and ask me.....this approach really helped.
About a year into my fibromyalgia diagnosis I got counseling for about 6 months, to learn how to cope, what to think, how to approach this from "why me", to "why not me" and how to frame it differently in my mind. The challenge is still there esp. when the flares are long and hard and feeling isolated is a thing, but now I know how to bring myself back and over.....

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