With the statistics of how many people have arthritis who are younger – 2/3 are under 65 – it amazes me how few people understand particular things about our lives. A few years ago, I wrote a blog post about things a millennial with arthritis wants you to know, and I was shocked at how few of those things people knew. This brings me to today’s post, a follow-up that shares more things a millennial with arthritis wants you to know. I’m 25 – turning 26 in June! – and I’ve been in pain since 2001. I was diagnosed with arthritis in 2010, and I have over 50 joints that are affected. My entire life is affected by this disease, and I’m not the only one my age who has arthritis. I hope that this piece helps you understand what our lives are like and helps you to understand ways you could be hurting us without realizing it.
This is a follow-up to 8 Things a Millennial with Arthritis Wants You To Know. If you can donate to my Walk To Cure Arthritis fundraiser – even just $20 – please donate here.
1. Sometimes I need an assistive device, sometimes I don’t. – Every day is different, and whether I need help (like a wheelchair or a cane) depends on how I’m doing that day and what I’m doing. Sometimes, I need it to prevent things from getting too bad. Sometimes, I need it because I’m doing really poorly. Whatever the reason, just because I look fine doesn’t mean that I don’t need to use that device. And when I use a wheelchair, I can still walk. I use it because I can’t do a long-ish walk, which means something different for me than it does for other people. I can’t do museums unless I’m in a wheelchair, for example, because of how much standing and walking is involved. It varies a lot on the day, how I’m doing, and where I’m going.
2. I fight for every day. – Some days, the fight is smaller than others. But I have to fight for everything that I do. If my body had its way, I wouldn’t do anything ever; I would just lie down the entire day. (In fact, when I was in the hospital in March, I didn’t need my pain medication at all because I was just lying down for 5 days.) But that’s not how I want to spend my life, so I do my best to go to school, to go to work, to function as a semi-regular person. And you would have no idea that that’s what’s going on because I keep that inside. I don’t want people to know how much I have to work for everything because a) I don’t want to talk about my health all the time and b) it makes me uncomfortable when people very obviously pity me. Help me, offer ways to help, but don’t pity me. As a whole, though, recognize that I’m fighting to do everything I can. If I have to cancel plans or I don’t commit to something you think I should be able to do, it’s because I’ve recognized that I can’t win that fight.
3. I generally hold back how I really feel from everyone. – Similarly, I keep how I feel on a regular basis to myself. When I talk about my health (even on social media), what I share is probably a tenth of what I’m experiencing. A few years back, I participated in the Chronic Life experiment where I tweeted every time my health affected my life; my phone battery was drained within a few hours because of how much I shared. Basically, you need to know that we hold back a lot of how we’re feeling – physically and mentally – so what you hear is nothing in comparison to what’s going on. If I say that I can’t do something and you think that this is coming out of the blue, it’s not. I’ve just been holding back how I feel so that you don’t know what’s going on entirely. I’m trying to get better about this with my friends and family so that they’re not shocked when something happens and they have a heads up on how I’m doing on things, but I still hold back a lot.4 More Things a Millennial with Arthritis Wants You To Know Click To Tweet
4. I’ve tried a lot of treatments and ways to deal with my symptoms, and I’ve researched even more. – This is my biggest pet peeve: when people who have never examined me or have talked to me only a bit give me medical advice. Let me explain something – I have done a TON of research over the years. I have tried everything or we have determined that something wouldn’t help me. The fact that your neighbor has RA and x treatment worked for him doesn’t mean it will work for me. The fact that a specific herb really helps your symptoms doesn’t mean that they will help mine. And the fact that you’re sharing this information with me when you have no medical background and have never heard my full medical history or information shows that you’re just trying to be the person to fix the situation, which is so beyond annoying. It’s nothing against you, but it’s everything against your opinion that you will be able to help me when many doctors haven’t been able to. Hell, plenty of trained medical officials have not been helpful or suggested treatments that wouldn’t work for me. I had a rheumatologist in Nashville tell me that my hands looks fine; I currently have 6 fingers with visible RA damage. So your amateur medical opinion will probably do nothing more than annoy me.
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