In honor of invisible illness week I am doing something I don’t normally do. I try not to make this blog about my personal struggle with my invisible illness, although that certainly has an impact on what I write. Instead, I try to write about things that encourage and inspire the invisible illness community as a whole. I don’t see this blog as an inward focused therapy for myself, but rather as an outward focused encouragement for others. Since one of the things that Invisible Illness Week is promoting is helping people with invisible illnesses not to feel invisible, I have decided to show you a bit of my personal struggle with invisible illness so that it might also be a bit more awareness to the world. So here it is,
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Undifferentiated/Mixed Connective Tissue Disease. For me so far, this means a combination with Sjogren’s Syndrome, Systemic Lupus Erythematosus, and Rheumatoid Arthritis. Our little family would also like to extend its welcome to the newest addition, Ulcerative Colitis. We thought eating was overrated anyway.
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2000, but looking back I can see I have had subtle indicators my whole life.
4. The biggest adjustment I’ve had to make is: learning to accept my limitations. I use to be a big believer in mind over matter. Learning that wasn’t always possible came as a shock at first. Now I understand that I have to recognize and respect my limitations if I want to maintain my health.
5. Most people assume: I have some trivial disease that I am obsessed with and am really fine.
6. The hardest part about mornings are: the fatigue. It’s hard to explain to someone who is not battling an autoimmune disease what that type of fatigue feels like. It’s not the kind of fatigue where you just don’t feel well rested and will need to get to bed early that night. It is a debilitating fatigue that feels like your body is shutting down and you can’t stop it. I also wake up with bad joint pain, especially on cold mornings.
7. My favorite medical TV show is: Doctor Who. I find that I get enough off all things medical in reality.
8. A gadget I couldn’t live without is: my electric blanket. I only emerge out from under it for two months out of the year. The cold really causes severe pain in my joints. I get really stiff and have a hard time moving when I am cold as well. I stay ice cold nearly all the time. I don’t know why but I am always freezing, especially when I am going through a flare. So I absolutely must have hot baths and my beloved electric blanket.
9. The hardest part about nights are: The pain. Right now it is fall and the temperature drop at night causes my joints to hurt very bad. I often wake up several times throughout the night in pain. Also, if I don’t eat right I have severe stomach pain. Imagine trying to sleep while you are being repeatedly stabbed in the stomach and you’ll understand why this is the hardest part about nights!
10. Each day I take 10-12 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: depend heavily on them and advocate for everyone to utilize them.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. Sometimes its hard to not have the validation a visible illness provides but most of the time I’m really grateful to look good, especially for my kids sake.
13. Regarding working and career: You can not possibly understand how hard it is to balance life when you are running on half of the energy the rest of the world is unless you’re doing it.
14. People would be surprised to know: the level of effort it takes for me to do things that are easy or nearly thoughtless to others, such as showering, cleaning, shopping, etc. Also, I follow an incredibly restrictive diet to help manage my symptoms. No grains, sugars, starches, or fun. My illness has caused me a lot of pain. I have had two full-term still-births that occurred during labor and emergency surgery twice because of my disease.
15. The hardest thing to accept about my new reality has been: that this is as healthy as I will ever be. It is a downhill prognosis.
16. Something I never thought I could do with my illness that I did was: become a black belt in tae kwon do. People will never have any idea how much more difficult that was for me than the average healthy person. I had to overcome a lot of physical, mental, and emotional challenges that my condition presented in order to achieve it.
17. The commercials about my illness: don’t exist??? Half of my immediate family doesn’t even know the name of my disease. Most of the time I just tell people I have lupus because a few are at least somewhat familiar with it.
18. Something I really miss doing since I was diagnosed is: being spontaneous. You can’t say yes to things without thinking anymore because you have to always keep your spoons balanced.
19. It was really hard to have to give up: training hard in martial arts
20. A new hobby I have taken up since my diagnosis is: organizing my pills by color, size, and effectiveness. Just kidding. I went back to crocheting a bit because I can do it while resting if my hands aren’t hurting.
21. If I could have one day of feeling normal again I would: say YES! to everything my kids asked to go do that day. We would do all of the fun things I don’t feel up to doing.
22. My illness has taught me: that life is fleeting so make a difference while you can.
23. Want to know a secret? One thing people say that gets under my skin is: when they want to tell me about someone who “has it worse”, like cancer. No, I don’t have cancer. Cancer patients have support, oncologists that specialize in their treatment, awareness of their plight, and the chance to recover. I don’t have any of those things. No, my autoimmune disease won’t kill me, but I will die from it. Can you get that? It is just as serious and as bad as cancer to me.
24. But I love it when people: Ask me how I am coping/doing that day. It’s nice when people understand that this is an everyday battle and ask how that battle is going for the day.
25. My favorite motto, scripture, quote that gets me through tough times is: You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. Genesis 50:20
26. When someone is diagnosed I’d like to tell them: It affects everyone differently. There are no two people that have the same symptoms or progression. You have to figure out what works for you in your battle. Don’t expect to follow someone else’s plan for their disease and expect it to magically work for you. We all have to tweak things to fit our own disease. It’s normal to be different.
27. Something that has surprised me about living with an illness is: how you end up connecting on such a deep level with people you never imagined because you share these life changing struggles with invisible illness.
28. The nicest thing someone did for me when I wasn’t feeling well was: Mr. Autoimmune Mess will often times insist that I relax in a hot bath when he notices I am struggling or in pain because the hot water does wonders for my aching muscles and joints. He will even draw the bath, add some bubbles, and light candles for me sometimes. The best part is, he keeps the kids away and gives me as long as I need to unwind emotionally so I can begin to come back physically.
29. I’m involved with Invisible Illness Week because: If we, with invisible illnesses, can’t find support from each other who understand what it is to deal with, then where will we find that empathy we need? Support for invisible illness is often limited. If I can offer my support and accept the support of others then it will make a difference in our invisible illness community.
30. The fact that you read this list makes me feel: like you actually care about what I am facing which is a huge part of my life and because of that shapes part of who I am.
Was there anything on this list that surprised you or that you could relate to? Let me know, I would love to hear about you in the comments!