Navigating a New Diagnosis, Invisible Illness, and Feeling Overwhelmed

Posted by MarleneViola @marleneviola, 1 day ago

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.

peaches73 | @peaches73 | 12 hours ago

Hi Marlena,
I know exactly how you feel and I understand the mixed auto immune disease. I have sjorgens, fibromyalgia and osteoarthritis. I'm beginning to think the doctors think I'm acting. But that's okay, I tell myself God knows and I can ask him anything. I'm 73 yo female and had sjorgens a out 10 years before a lady rheumatologist asked me "does your mouth feel like it's on fire" I said yes, she said sjorgens then ran every test under the sun to confirm it. Another rheumatologist told me more than once he didn't think I have sjogrens, needless to say don't see him anymore. And some doctors think that sjorgens only affects your eyes and mouth. Sure wish that was the case. Marlene we can't give up and you might have to try different doctors. I was ready to move back to Florida then I read your post and thought about it and still am, yes Mayo Clinic is rated the best in America and that's why I was thinking about moving back to FL. Your feelings on family things is normal too. I was so tired last night that I had to tell my son and his wife no to an invitation to dinner. I was in bed at 6:30, been having migraines going to bed and getting up. Don't understand it, very tired like you are and weakness to walk fearing of your leg giving out, with no warning. So keep parking in Handicapped and if you will ask your doctor for a form for handicapped tag and or sticker that you can hang on mirror. Have a nice day Marlena and feel free to text back. We are not alone in this boat.

kjoed53 | @kjoed53 | 9 hours ago

Don't be sorry for something that is out of your control. I have a temporary handicap placard good for 6 months that I can renew once before I have to apply for a permanent placard. If I can find a close parking spot I don't use it but I will if I need to. I have PMR and SMM. I don't have to tell people how I feel, they can see it. There's things I don't do because I know when I'm having one of those bad days, and I don't do very many things that require a lot of walking unless I know there's somewhere there that I can park myself when I need to rest. I go to bed early when I need to, nap unapologetically and say no when I have to. I'm 73 and I've only been dealing with this for a year so I'm still getting used to it.

momac59 | @momac59 | 5 hours ago

Hi Marlene.
These autoimmune diseases are so hard! I’ve been dealing with them for 30 years, diagnosed with Lupus at 37 years old. Everything in the process is difficult, from dealing with the scary symptoms, then trying to get Doctors to NOT dismiss them & treatment, trying to find ones that work and don’t cause bad side effects if you’re lucky enough to get a diagnosis to start. It all does such a number on your head! Trying to accept the changes these diseases force you to make, for me it was like grieving. Such a sense of loss that I felt; couldn’t do some of the activities that I loved like hiking, pickleball, tennis etc. I was angry at times, went into denial then depression before I finally accepted “what is”. Some years over the past 3 decades have been better but then when a flare hit, I experienced those feelings again Now, I get to acceptances a lot quicker. This past March & April I got really sick; worse than any Lupus flare. I ended up at Mayo ER, admitted for 2 weeks in a major autoimmune firestorm. After a biopsy of both temporal arteries I was diagnosed with Giant Cell Arteritis. I’m still recovering but with a great Rheumatology team at Mayo & medication, slowly healing.
I have learned so much on this latest part of my journey; gratitude, acceptance, listening & respecting my body with healthy eating, exercising the appropriate amount of- not pushing on rough days & finding ways to calm my anxious racing mind with meditation. Going to my safe, quiet mindful place doing my artwork.
Really important is honestly communicating with people in my life. Well meaning family & friends sometimes don’t understand unless they have chronic illnesses. They look at you & remark that you look good, not knowing how bad you really feel. Makes you feel like you have to justify or prove your illness, even to yourself.
All of this is why sites like this & support groups are so important. These folks really get it because they’ve been there. The sharing of experiences & knowledge is so helpful.
And remember it probably won’t always be this intense. It’s always more overwhelming at the beginning or when a flare hits, feeling like this illness is taking over your life every day.
Knowledge is power so stay connected with others in this forum & do some of your own research ( not obsessively though) & have good communication with your doctor; Don’t be afraid to ask a lot of questions.
Hang in there & know you are definitely not alone!!

suecutuli | @suecutuli | 4 hours ago

DID I WRITE THIS?
This is me!
I cannot text much now but I had to comment because you are telling my story.
Hang on, took me 18 yrs to get diagnosed. More to follow.
And please share any help Mayo gives you. Take care❤️