Living with a form of inflammatory arthritis like rheumatoid can be an adventure, let me tell you. I was diagnosed in 2010 and have been through a lot since then. And that includes a fair number of problems. So whether you were just diagnosed or it has been a while but you haven’t found a fix, I hope an explanation of how I deal with these problems will help you. Plus, at the end of this post I have an amazing resource to help you majorly improve your photography! I’ve been trying to improve my photography for a while, so this resource is super helpful.
Before we get into this, I do just want to share one post in particular. It’s called Beginner’s Guide: Seronegative Rheumatoid Arthritis, and it’s exactly what it sounds like. I’ve you’ve recently been diagnosed with RA (especially seronegative RA), check that out for more tips.
This post contains affiliate links. Thank you for supporting Kate the (Almost) Great!
People think I’m making up or exaggerating my pain – This has been an issue for years. It mostly stems from the misconception that only older people get arthritis, but also from the misconception that no one young could live with the pain that I describe. Unfortunately, age does not prevent chronic pain or chronic illnesses, and someone in 2018 people don’t understand that. How do I deal with this? If possible, I educate people on arthritis, even if just the brief fact that arthritis affects people of all ages. Additionally, I do my best to educate all people if possible through this blog and my social media about living with arthritis. Honestly, though, my favorite response to snide remarks from people is “Unfortunately, that’s not how it works.”
“But it’s just arthritis!” – If I had a dime for every time someone said this or a variation of it … *rolls my eyes to infinity*. Most people just don’t understand that what they think of as arthritis is only one form of arthritis (osteo) and that inflammatory forms are completely different. How do I deal with this? I generally go down one of three routes. 1: I explain the difference between osteoarthritis and rheumatoid arthritis. By now, I have a standard couple of sentences that I use every time I have to explain RA. It basically boils down to, “Actually, rheumatoid arthritis is different than osteoarthritis. RA is an autoimmune disease when my immune system attacks my joints, whereas OA is usually general wear and tear.” 2: This depends on what sort of the situation I’m in. If I’m having just a passing conversation and I don’t have more than a second, I say something like, “It’s actually more complicated than that.” 3: If this person doesn’t seem to really care, I just ignore it. While I personally enjoy educating people about arthritis, I’m not going to force it down someone’s throat if they only care about putting me and my situation down. It’s not worth the emotional effort. If you want to educate people but don’t have the energy to do it yourself, you can share these posts with them: Is Arthritis a Big Deal? and What You Need To Know about Arthritis.
Navigating daily medications – It can be difficult to stay on top of your medications if you’re not already taking some, and there’s a good chance that you’ll be put on at least one daily medication or supplement. How do I deal with this? In my opinion, if you’re taking more than one medication daily, it’s worth it to get a weekly pill organizer. I actually have two so that I only have to refill my pills once every two weeks. They come in a variety of shapes and sizes, and there are options depending on how many times a day you need to take your medications. Here are some fun ones, all of which are under $10: 7-day, 3-times a day pill case where you can remove each day; 28-days, 1-time a day pill case; 7-day, 4-times a day stackable pill case where you can remove each day; 2 packs of 7-day, 4-times a day pill cases; 3 packs of 7-days, 1-time a day pill cases that are shaped like slices of citrus fruits (you can also order just 1); 7-days, 4 times a day pill case that comes in a wallet-looking container where you can remove each day.
Another tool you can use is the alarm function on your phone. I have 4 alarms go off over the course of the day, once for every time that I need to take pills. It doesn’t have a sound, but it’s a good reminder to take my medications.
Remembering everything that’s asked on forms at doctor’s offices – There are two general forms that you have to fill out at doctor’s offices: either the whole workup (symptoms, family history, medications, etc.) that you need to do when you start seeing a new doctor or just the recent symptoms for someone you’ve seen before. The first can take forever to fill out because there is a lot that needs to be covered, while the second is a bit easier. But it’s so easy to forget things that need to be on the first form(s), and a lot of the time there isn’t enough space for all of my information. How do I deal with this? I started making a one-page sheet that holds all my up-to-date info. It has an overview of my conditions, surgeries, medications, family history, and doctors. You can get it here.
My own personal resistance to using mobility devices – I felt like I was admitting defeat to use mobility devices like a cane. I felt like I was letting the arthritis win. (And it didn’t help that people make comments like, “Do you really need to use a cane?” because that messes you up when you’re dealing with your own resistance to using it.) How do I deal with this? I had to remind myself, “This will make your life easier. It’s okay if you need to use a cane some times.” I had to remind myself that if I didn’t use it, I wouldn’t be able to go somewhere or do something I wanted to do. Once I used it for the first time, I realized just how much it helped me.
Taking forever to find a treatment that works – This was so hard. Because you have to take medications for 3ish months to see if they work, it took me 2.5 years to find a treatment that worked. That took a huge toll on me mentally, not to mention physically. Every time I tried a new medication, I would get hopeful. Then 3 months would pass, nothing had changed, and we started all over again. How do I deal with this? I tried to find non-medication ways to help my pain. They didn’t make a huge difference – if they did, I wouldn’t need medications – but they helped me enough to make it through. Here are some of the non-medication tools I use.
Feeling alone and like no one understands – I think this is how most people with chronic pain feel at some point, but that doesn’t make it any easier. It’s hard when you don’t know anyone in your life who knows what it’s like to live with chronic pain, especially because it makes you feel alone. Your family and friends can’t imagine what this is like unless they’ve experienced it. How do I deal with this? Get involved with the chronic illness community online. In the years since I was first diagnosed, several other people in my life were diagnosed with various other chronic illnesses, including ones that go with chronic pain. But obviously you can’t assume that will happen. There is an amazing community of people with chronic illnesses online. On sites like Twitter and Instagram, use hashtags like #chronicillness or #rheumatoidarthritis to connect with other patients. You can explore those hashtags and see the people who are posting about them and they can do the same with you. Once you find some accounts who seem to know other people with your illness, you can also ask them who you should follow. On sites like Facebook, there are groups for patients that you can join. Also, here are some chronic illness bloggers to follow.
Like this post? Check out:
10 Things I Wish I Knew When I Received My Rheumatoid Arthritis Diagnosis, College Tips for Disabled Students, Tools for Pain Management That Aren’t Medications, So You Were Diagnosed with a Chronic Illness: What You Should Do Next, Beginner’s Guide: Seronegative Rheumatoid Arthritis
Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.
Go through all of the above then get results that show your liver is dying from cirrhosis never having a drink or illegal drug in your life . How do you deal with this. I have handled all the other stuff.