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My Invisible Fight

September 23, 2015
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Last year, I recognized Invisible Illness Awareness Week on the blog by writing about my experience lobbying for arthritis with the American College of Rheumatology. I’m doing that again this year, but I don’t have time to get all advocate-y right now. In fact, I am a little overextended at present and dealing with some flare-ups, so this prompt came at just the right time!

logoiiwk15-45030 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: Around age 2
3. But I had symptoms since: I was around 18 months old
4. The biggest adjustment I’ve had to make is: to motherhood, the physical and emotional demands of caregiving
5. Most people assume: I’m fine, or worse, that I’m some kind of hero
6. The hardest part about mornings are: starting the day tired and in pain
7. My favorite medical TV show is: ER (and I settle for Grey’s Anatomy because Netflix is holding out on me with ER)
8. A gadget I couldn’t live without is: an electric can opener and this thing…

for opening baby car seats

for opening baby car seats, which are the DEVIL

9. The hardest part about nights are: knowing I won’t get enough sleep, knowing I’m going to wake up in pain.
10. Each day I take at least 6 pills. (though I also take an injection once a week that comes with 4 more pills, and sit through an IV infusion that lasts 5-6 hours twice every four months)
11. Regarding alternative treatments I: get recommendations all the time, so thanks, but no thanks. I’m not living without bread and alfalfa tea and fish oil are gross (yes, I tried freezing the fish oil capsules…cold and gross). I did recently acquire an accupressure pad, but haven’t used it enough to endorse it wholeheartedly. Heating pads, however, are amazing. I mean, look at this gorgeous deliverer of warm, electronic-induced goodness:

20140731-150937-54577501.jpg
12. If I had to choose between an invisible illness or visible I would choose: not to answer this question because disability isn’t a comparison game! HA! Don’t get me wrong, invisible illness has its challenges (the explaining is tedious), but there is a mess of privilege that comes with passing for an abled person. 

This comparison thing is one of those areas that comes up when we lobby for research funding. “Cancer patients were in here this morning asking for funds. Which disease do say ‘no’ to?” they ask. FUND THEM ALL. Autoimmune diseases benefit from all kinds of research. Half the meds I take were created to fight cancer or malaria, so have at it, researchers. Visible, invisible, we should all be recognized and heard. Togetherness FTW!
13. Regarding working and career: I’ve worked part-time for years and would need lots of flexibility on the job if I were gainfully employed right now. I’m fully aware how much privilege I experience because I am 1) married to 2) a wage-earning spouse whose income and health benefits can support our whole family. Arthritis is the leading cause of disability and I would probably apply for it if it weren’t such a prohibitive process.
14. People would be surprised to know: how much planning goes into my daily life. I plan everything, and almost everywhere I go, everything I commit to doing, I have contingency plans. If you want to understand why, read this about spoon theory.
15. The hardest thing to accept about my new reality has been…since I was diagnosed as a toddler, this reality isn’t “new” to me. The hardest thing I’ve had to accept is the loss of independence. I depend on others and there’s not a damn thing wrong with that. We all do, really, even though our culture cherishes independence like some kind of idol. Embracing interdependence has been liberating for me.
16. Something I never thought I could do with my illness that I did was: rocking motherhood. Stupid, un-openable, child-proof everythings.
17. The commercials about my illness: are about somebody else (whom I’ve never met in real life). No over-the-counter drug has touched my pain, and no prescription drug has turned me into a pro golfer. I get tired just watching those “we’ll make you active again!” commercials. Have fun with all that gardening, y’all.

Squatting is so overrated.

Squatting is so overrated.

18. Something I really miss doing since I was diagnosed is: I miss nothing! I’m sure there’s something I miss. Hiking might be fun. Turning my head would be nice. But most of the things I cannot physically do, I’ve never been able to do, so I’m good.

run
19. It was really hard to have to give up: a hip. That really sucked.
20. A new hobby I have taken up since my diagnosis is: If I’d answered this as a kid, I’d say collecting stuffed [marine] animals. I don’t know if I have any hobbies as an adult. Hmm…Twitter? Is Twitter a hobby?
21. If I could have one day of feeling normal again I would: Since I’ve had RA for all my memory, this is my normal. But if I had a day of full-cartilage strength and painlessness, I’d probably run around and lift things. Or ask for more wishes. Shoot. I should have said that first.
22. My illness has taught me: 1) People don’t know enough about arthritis. 2) Or other folks’ struggles. 3) Pain can be isolating and/or community-building, depending on your people.
23. Want to know a secret? One thing people say that gets under my skin is: the whole “you’re so inspirational” thing. I don’t get it often, but sometimes “you have such a good attitude” comes too close for comfort. That inspirational pedestal is an island, and I refused to be exiled. If I inspire anything I want the takeaway to be that folks should listen to and believe others about their experiences, even if those experiences contradict what folks have learned from their own lives. Being disbelieved and misunderstood has caused me to examine my own tendency to disbelieve and misunderstand.
24. But I love it when people: are ready to open things for me when I ask. Like, “no big deal, I open people’s mustard packets all the time. I regularly pump gas for people I barely know. You were saying?” Also, I love it when people have plugged the electric carts back in at the store. A display that reads “full battery” is a beautiful thing.
25. My favorite motto, scripture, quote that gets me through tough times is: Merp. I have no go-to for this. I would probably mock myself if I could distill the struggle into a motivational poster with some cat dangling from a twig. When it’s tough, I get sad and wallow. Old fashioned pity parties are my JAM. When that’s done, I think about the goodness of God and the fragility of human existence. We’re all wrecked, or soon-to-be, so I think about what’s next and deal with that. I do not pray for healing.
26. When someone is diagnosed I’d like to tell them: Grief is okay. Everything will be different. Different isn’t bad, even if it hurts. People will want to cure you (and that can mess with your head). You are not an inconvenience. Fight for yourself. Take a nap or a bath or a Vicodin if you need it. People don’t understand, but they can learn. Sorry, you’ll have to teach people how to deal with you. That’s exhausting, too, but you’re already tired, so just go with it (unless you don’t feel like it, in which case, tell them to Google or say a little swear to scare them off). Save all nuclear options until you really need them.
27. Something that has surprised me about living with an illness is: the endurance I have to do it. It builds and has yet to run out on me.
28. The nicest thing someone did for me when I wasn’t feeling well was: they went home and didn’t make me feel bad about giving them the boot. Oooh, or the nurse that let me heave-sob cry out of relief when they finally got pain IV meds on board.  Like, “no big deal, people come in here and hyperventilate tears all the time.” She was aces.
29. I’m involved with Invisible Illness Week because: I know a lot of people with these problems who won’t talk about it because, frankly, it’s none of our business and/or they don’t want to seem like they are complaining. I freely complain, so here we are.  (PS-If people say that just telling them facts about your life is “complaining” then get new people quick-like.)
30. The fact that you read this list makes me feel: hopeful that you will keep learning and do something with that knowledge. Here’s a good spot to start. (Well, looky there, I managed to lobby you after all.)

  

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One Comment leave one →
  1. Trix permalink
    August 13, 2017 5:37 am

    Thank you for your tip on the Irwin car seat opener tool. I have 3 babies in bucket seats. I have had RA for 30 years. I bought the Bucklebopper but it didn’t work for me as it requires wrist strength. I;m going to look for the Irwin tool and hopefully that will help with independence in opening the car seats. 🙂

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