By special reader request here is a re-post of Jonathan H’s extraordinary ’10 Rules for being well in sickness’ that first appeared in October 2014.
Every fight has rules and RA is no exception. When RA is fighting dirty, I turn to these rules to keep my humanity. Here are nuggets mined from years of trying not to get beaten down by rheumatoid arthritis.
2) I am not my diagnosis. Surely everyone has heard this as a caution from somewhere or other, and I have found it to be sound advice. Becoming one’s diagnosis can result in a diminished perspective on the world and a resultant shrinking of choices. I have found it to be disempowering and flirting with being a victim. I am really so much more, and so are you. I have interests and hope and dreams and relationships that I nurture with fierce tenderness because they will tide me through the hard times. It pays me to focus outside my body.
3) I did not earn my condition. There is a rabid-reasoner inside me that perpetually tries to figure out what I did to cause/deserve this and how to avoid it continuing. It drives me nuts. At some point after all the diets and privations and lifestyle changes and regimens I am forced/relieved to accept that this condition is random, insidious and not caused by me. It relieved a lot of guilt and freed up mind space for better things.
4) Don’t brag about my illness. Just as I am not my condition and I didn’t cause it, there is nothing inherently special about my disease. Sure, it’s somewhat rare in the general population, even more so in healthy young men, but it doesn’t make me special.
If my being ill may be germane to a conversation I run it through my mind and use the “hemorrhoid test” to check whether I would be willing to swap “rheumatoid arthritis” for “hemorrhoids”, and whether I would be willing to disclose that or if it would be weird in the space. If it seems odd, I remain vague about the specifics of my well-being. Everyone has something physical going on and most people keep it relatively private. It feels rude to trumpet my own woes into a space as if they are everyone’s priority, and I prefer to have conversations about things other than my and your health. In the face of advocating for fellow RA patients, this is a fine line to walk and a very personal choice, but it is mine to make.
5) My disease may be invisible, but so are most of them! I cannot expect people to know what is going on with me and thus expect special attention. If I need someone to know, I’ll have to bring them up to speed slowly. I am all too familiar with the jargon of symptoms and diagnoses and pharmaceuticals, but they have no clue. Really…none. I have to be as patient as I wished my first rheumatologist to be, walking them into the craziness of auto-immune disease with baby steps.
Equally, I cannot expect that every person I meet is healthy in every capacity and flourishing in every way. People are suffering, most of them invisibly. My experience with suffering can give me compassion when dealing with others if I choose to exercise it, and if I give others leeway and understanding there will be more chance that it comes around.
6) My disease is not an excuse. Sure, it could be a handy catch-all for not performing as promised, but that’s a quick way to stop getting phone calls, both work and social. Obviously my disease sometimes makes meeting my commitments impossible, but I try to build in a buffer on the front end by disclosing (only when it matters) that I have a physical condition that sometimes interferes with deadlines. Planning for success, as it were…
When I feel a flare-up coming on I alert all people I have commitments to for the next 36 hours that I may be laid up. That way I can feel at least a modicum of responsibility. Oftentimes I can find a physical workaround for some limb that may not be working well and can make do in a situation, but all too often the fatigue and pain combo cannot be denied and rescheduling is in order.
7) Be gracious. In the middle of a flare-train with all input narrowing down to a sharp white focus of pain and there are things to do and shit is going wrong and it’s just too much to handle I have every reason and understandable excuse to snap at someone who is not doing their level best to help me in my distress. And yet I don’t have any right to do so. It would just make me a crappy person to offload some of my pain onto another. Knowing what I do of how miserable pain is, why on earth would I want someone else to experience some?
8) Be active. I still have a life, and the more active I am the more life I have. Keeping my body moving and my mind focused on things outside of myself seems to help ameliorate many of the symptoms I have. Keeping the joints moving, while at times very difficult, is key to keeping what range of motion and muscle tone is still left. I found that being determinedly active is the single best tool I have in the fight against the depression that shadows RA. It helped to create and join communities that call me to be active rather than trying to go it alone.
9) Let RA be a teacher. Stop. Shut up. Listen. The places that RA has taken me are mostly places that I would never have chosen on my own; some quite extreme places in my mind and body that, if I choose to let them, can expand my world and perspective. It has taught me that I can slow down and that the world will not come crashing around my ears. I can even give up, and the world somehow carries me along. It has taught me that I can endure, that I need to be gentle with myself and listen to the vehicle that carries my spirit. These things and many more I have learned from this harsh teacher on the advanced course of life.
10) There is hope. Even as I type this there are better days ahead. There will be days with diminished or no pain. Remission happens, and if I got sick I can get better. There may be a medication or protocol I have yet to try that may offer sustained relief.
The future is coming fast.. Day and night there is research going on to find out how this disease works and how to address it, legions of people, unseen and unsung, giving their best efforts to help me get well. RA has come out of the closet and into the public eye and is increasingly being accepted and understood and there are ever more opportunities to be involved with research and advocacy in the race for better care. I can be working for a cure even as I am bed-ridden!
There are communities online dedicated to supporting us in this awful, awful disease. If you are feeling a lack of hope, please reach out to me or any one of the forums out there for some ‘attaboys’ or some real-world resources. You are not alone. Together it is easier.