How an Autoimmune Disease Changed My Perspective

Ten years ago, at the young age of 29, I was diagnosed with an autoimmune disease.  Graves’ Disease affects less than 3% of the population and occurs when the immune system attacks the thyroid. While it’s treatable, there’s no cure. It took almost 2.5 years and two treatments before I was on my way back to wellness.

Besides the health aspect giving me quite the scare, it also made me view my future a little differently.  Both my endocrinologist and GP confirmed that once you have one autoimmune disease, you are at a slightly higher risk to develop another. Graves’ is bad, but the thought of getting MS, RA, or lupus terrifies me. Those are degenerative and can be truly debilitating. My doctor has downplayed this connection but it’s still a very real possibility.

By no means do I live my life in fear. I try to take good care of myself (although I could do better, if I’m being honest) and I see my doctor annually. But after one health scare, I’m fully aware of what can happen and just how hard on the body it is. What if I get sick and can’t work until I’m 67? Sure, there’s disability via Social Security, but would that be enough?

Being sick is not something I’m planning on but it’s certainly something that I want to be prepared for. By setting a goal to be financially independent by the time I’m 50, I feel much better about what may come. Knowing that I wouldn’t have to deal with a full time job while battling an illness brings me peace of mind. I’ve done it once and definitely don’t want to do it again. Even if I don’t have enough saved to officially retire, I know that I could take a couple years off and return to the workforce once I’m healthy again.

Having an autoimmune disease hasn’t made me fear for my health or my future. But it has definitely opened up my eyes and made me determined to be better prepared for whatever the future may hold. It’s my responsibility, and mine alone, to ensure a secure financial future. I have the benefit of dealing with an illness while being covered by comprehensive medical insurance, where other people have not been so lucky. This has allowed me to recover without suffering financially, and has given me time to prepare for the future.

Have you ever faced an illness that changed your perspective, for better or for worse?

3 thoughts on “How an Autoimmune Disease Changed My Perspective

  1. Hi Kate! I’ve been thinking about your post all week, and raring to reply! My mom has Hashimoto’s, so I always knew there was a chance I’d get diagnosed with an autoimmune disease, too, though I assumed it would be hypothryroid, too. (Turns out my thyroid is still working just fine at age 36, so yay.) The scary thing was that the AI I first got diagnosed with was… MS. For years I had tingling and numbness in my hands and feet, and then I started getting more stumbly. My feet just didn’t seem to be working right, and my balance was getting worse. It was pretty terrifying to be only 30 and feel like my mobility was going to be gone soon. I’ll spare you all the middle details, but I also had restless legs syndrome, and in trying to improve that, I inadvertently stumbled upon gluten as a potential agonist, which led to a celiac disease diagnosis. At first I thought I had two AIs, but over the course of the first two years of going gluten-free, my MS symptoms totally disappeared. Lesson: figure out all potential causes! My neurologist now thinks that I never had MS (or it’s possible that I do have it but have slowed it dramatically by going GF), but instead had a form of celiac that impacts nerves. I feel SO lucky to have an AI that is treatable with food choices alone, doesn’t require drugs and doesn’t require surgery. I still have an elevated risk of developing other AIs, along with intestinal lymphoma, but given the choice of AIs, I feel really fortunate. So now I am pretty evangelical about trying a gluten-free diet. I don’t think gluten is evil or that everyone should be GF, but I certainly think anyone with an AI should at least *try* it for a few months to see if it helps. Worst case, no change, and then you can eat all that delicious gluten to your heart’s content. But best case, it might actually help or even completely pause the disease. It’s worth a shot!

    Like you, I feel like the AI stuff has given me a renewed sense of urgency in getting our finances in order to be free sooner rather than later. If the MS does come back, I want to know that I still have a few good years of climbing mountains before I’m stuck in a chair!

    1. Wow, thank you so much for sharing your experience! I tried for 2 years to go into remission, but we couldn’t get it to happen so I had to do the radioactive iodine treatment, which was really easy and painless. But I’m relieved to have an AI that is easily treatable, although it means that I have a non-functioning thyroid and will need to take synthetic hormone for the rest of my life. Things could be so much worse.

      Totally agree with you on the diet aspect. Once I was diagnosed I cut out all soda, drinking only water, coffee, and tea (with nothing added to any of them). A few years later I switched to a vegetarian diet, concerned about the chemicals and disease in factory farms. I still eat meat on rare occasions — holidays or at a relative’s farm only. It’s a diet that has worked well for me.

      It’s crazy that we were both around 30 when we were diagnosed. I often wonder what is driving the increase in autoimmune diseases. Part is probably more awareness, especially with celiac’s, but I wonder if there’s something in our environments triggering the disease.

    2. Interesting. You may enjoy a book called ‘Grain Brain’ which implies gluten as a trigger for many neurological diseases including Alzheimer dementia, depression, MS, migraines, etc.

      It is so easy to go gluten free it seems almost silly not to experiment with it to determine if you have celiac or non-celiac gluten sensitivity.

      I feel so much better off of gluten (cognitive function, GI, allergies, energy levels, headaches). When I did the experiment I was absolutely shocked at the change (I linked to the article in my name). I thought the way I felt on gluten was just normal, turns out it was not. Going into the experiment I thought the gluten free movement was crazy, now I’m a believer.

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