One of the surprises I've experienced living with autoimmune arthritis has been how dismissive people can be. It's just a little arthritis, people say. Well, here's some tangible evidence of how a little arthritis changes a life.
These are the new additions this disease has brought to my life--one week's worth:
Supplements, pain meds, sleep meds, and chemotherapy. Yes. Chemotherapy. That little vial is methotrexate--a drug which was developed from mustard gas and is used to fight cancer in higher doses. That's how serious autoimmune arthritis is. What you don't see: the pneumonia and shingles vaccines and the TB test I had this week in preparation for adding another med after some "wait time" to give the vaccines time to do their work. In three weeks, I'll begin injecting Humira every other week in addition to weekly methotrexate.
I'm grateful for every thing in this photo. I have insurance that helps me pay the doctors, labs, and pharmacies. And I'm thankful for advances in medical research which have created new treatments that may reduce my disability and add years to a life that otherwise would be shortened by the chronic, systemic inflammation that accompanies autoimmune arthritis. Compared to those who began their fight with arthritis decades ago, when treatments were few and less effective, I have a good dose of hope to go with all these meds.
If I could add one thing to this weekly routine, it would be the understanding and patience of friends and acquaintances. It's hard to understand if you haven't fought the day-in, day-out battle that arthritis brings. Arthritis is real. Arthritis is serious. The kindest thing you can do for me, or anyone else dealing with this disease, is to treat it like it's something--not nothing. It is most definitely something.
Love this. It's not just me! I'm sending my extended family a link to this, as they think I'm "making too much of this arthritis" and that I'm taking "an unnecessarily high number of pills" every day. *sigh*
ReplyDeleteYeeeeesssssss! I'm linking to this in my own blog: Ancient Reptile. Thank you for the good explanation of how our lives go. I watched a particularly aggressive RA mutilate and annihilate my mother 40 years ago. She died after 15 years of fighting the disease down to the wire - until her spine disintegrated and collapsed causing system-wide shutdowns. I sat with her as she died, little knowing that RA was sneaking up on me. Twenty-four years later, I was diagnosed after 23 years of migratory joint pain and swelling. It took that long for me to go sero-positive. My internist believed I had RA the entire time. My RA is milder than hers, which gave the opportunity to get my children grown and independent. At this point, I most likely have about 5-10 years left, but I already have passed my mother's death-age by 7 years. And I'm much less disabled that she was. Thank God for all small favors! You keep on telling people how it is. They need to know, to begin to understand.
ReplyDeleteCheerio!
Elizabeth
Someone asked me the other day, "Can't you just take aspirin for that?"
ReplyDeleteOh, Someone said that to me not to long ago. I was seething inside. Thinking if they only knew what I really go through day in and day out.
ReplyDeleteSuch a valuable post in beating back the idiocy. In my experience, said idiots tend to stop and thing when you mention chemotherapy and immunosuppressants - "oh, really? Well, that must be serious, then". Maybe. The thoughtful idiots, anyway.
ReplyDeleteGood luck with Humira - it's been my miracle medication. I hope it is for you, too.
Thank you for this. I get the same attitude from so many, and it just makes me feel awful. Because I'm relatively young (32), some feel that there's no way travelling causes so much pain, or that I need a day or two to recover from a road trip. They ask "Where is your arthritis," then think I'm being melodramatic when I respond, "Everywhere. It's a whole body autoimmune disease."
ReplyDeleteA very powerful visual....I never thought to display all the meds I take in a week. Better living thru chemicals!
ReplyDeleteI love this post. I am always baffled by people who say "Oh, I don't like pills, so I don't take my 1 pill a day to help my……” whatever they have. I am always tempted to tell them about the multiple pills and injections I take just to get by. They don’t fix, cure or relieve all the symptoms of RA but I can get by. Although I hate taking them, I am thankful everyday that they are available. I have seen the alternative and it is not pretty.
ReplyDeleteLove, love, love this visual. Fabulous idea! Sure helps put things in perspective. I'm so sick and tired of people "not getting it". Most days, I don't feel like anyone gets it. Thank God for people like you and the other autoimmune bloggers who tell it like it is and bring comfort to those struggling at the same time.
ReplyDeleteI pray that your body and mind are well prepared these next few weeks for the Humira on the horizon. I'll be checking on you.
Thank you SO SO SO much for posting this. I am 24 and was recently diagnosed with RA this past March. It's been hard to get friends and family to understand exactly what I'm going through everyday. The pain, the fatigue, the depression and grieving process. I constantly say that I'm NOT looking for sympathy or pitty. I just want UNDERSTANDING. Feel free to check out my blog. I'd love to get some of your feed back.
ReplyDeleteThanks!
Juli
I have Ankylosing Spondylitis - another inflammatory arthritis. I'm not as disabled or in as much pain as many people with RA. People are very ignorant about illness which they cannot see or have not experienced and can be especially unsympathetic when symptoms vary from day to day and even from minute to minute - as they can do for me. I look forward to reading your blog. I am sure there will be echoes of my own experiences here.
ReplyDeleteThank you all for your comments and kind words. The isolation and emotional pain that come from having people dismiss our my new reality has been so challenging. As Juli says, we don't want pity or sympathy, just understanding. Let me know what you hear from non-RAers if you share this with them. I wonder if it will have an impact on them. Thanks for reading!
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