Happy Monday! I thought I would take a bit of a different approach to talk about arthritis today. Here are 8 things I, a millennial with arthritis, want to tell you!
1. I’m not “too young” to deal with this. When someone says to me, “But you’re so young!” I’m assuming that they mean, “It’s too bad that you have to deal with chronic pain when your bigger life problems should be about finding a job and maybe a relationship since you’re 23.” But there is a better way to express it, especially since there are 300,000 kids out there with juvenile arthritis. Arthritis doesn’t discriminate!
2. I’m not trying to get out of things. Sometimes I feel a little paranoid that internally people are rolling their eyes and going, “Sure, she totally isn’t up for going to this event. But she could go to that event, so she’s fine.” If only it worked like that! But it doesn’t. Similarly, I do actually need to sit instead of stand, board planes early, use a cane sometimes, etc. Not faking just because you can’t see it – remember the parking lot incident with my disabled placard?
3. I can still accomplish a lot and be a productive member of society. Thank goodness for technology, am I right? I can keep in touch with friends, contribute to society, write, publish, advocate, work, and more all from my bed. So while I may not be able to work in the conventional sense of 40-hour week at an office, I can still earn money and give back to the community.
4. Not every day is the same; some are good and some are bad. And even the in-between days vary! Some times I gauge how I’m feeling based on whether I’m able to leave the house, if I’m up to wearing makeup, what types of clothes I’m wearing, when I need to take pain medication … it’s never the same.
5. No two patients are the same, although we may have similarities. So just because you know one person with arthritis doesn’t mean that you know everything that a patient goes through. There are some who have arthritis but you would never know because it is mildly active or in remission. There are others who need intense sessions of chemotherapy, surgeries, and are disabled. We run the gamut!
6. Arthritis is an autoimmune disease. I have two points to this. One is that while natural methods may help ease some symptoms, overall a natural treatment will not completely heal us. We can do everything possible in our daily lives to decrease what aggravates the immune system – like eating anti-inflammatory foods or not eating inflammatory foods – but there is no way to stop arthritis. Cases of remission with arthritis without treatment are not common. That’s why medications are so important; they suppress the immune system so that it can’t attack.
That brings me to my other point: the immune system is suppressed. Therefore, it it significantly easier for us to get sick, and it is much harder to recover from illness. Routine health problems that other people may dislike but don’t seriously worry about can be deadly for us. There are approximately 36,000 deaths and 200,000 more are hospitalized in the United States every year from the flu – and every year I worry that I may be one of them. That’s why it’s especially important for you to get the flu shot if you can: your immunity protects you as well as those around you who have a higher chance of serious illness.
Story time! In college, I was a part of the concert choir and we went on tour every year during spring break. When you have 50 people traveling and staying together in close quarters for 5 days without much sleep, illness spreads easily. I caught the cold that went around, except for me it turned into bronchitis. Tour ended on Thursday in D. C., I flew to Boston, and my dad took me to urgent care before my rheumatology appointment according to my rheumatologist’s instructions.
7. There is no cure for arthritis, although there is remission. Remission means that symptoms nearly disappear without the disease itself being entirely gone. The majority of patients (75-80%) live without regular periods of remission, which can be months or years depending on the patient. (source) We live with the knowledge that our future will have arthritis in it to some extent.
8. We are not drug seekers. Now, this isn’t to say that there has never been or never will be an arthritis patient who becomes addicted to their medication, as that’s just a naive thought. However, there are many arthritis patients who legitimately need pain medication. Their already difficult lives become even worse if the process to get their medication is nearly impossible and/or people at every turn treat them like drug addicts.
Imagine this: you have joint damage that causes you high pain and you’re trying to live a normal life. In order to do this without running to the ER for extreme pain at least once a month, you and your doctor agree that a prescription for Lortab (a combination of hydrocodone and acetaminophen, the leading ingredient in Tylenol) is necessary. According to law, there are no refills for the prescription and you need to go to your doctor’s office to pick it up in person every time you need a new one. You take your prescription to the pharmacy nearby, and as soon as they see what it’s for they start treating you differently. The pharmacists are a little rude and eye you suspiciously. When they go to check their storage, they discover that they are out of Lortab and it will take a couple of days to get it in. But your arthritis doesn’t care what their supply looks like. They make some calls and it turns out that there is only one pharmacy in the area who has some in stock. You trek over there, tired and in pain, to be treated rudely and suspiciously as well. By the time you have your prescription, you are emotionally and physically drained.
This is what I go through every month – and it could be much worse. In some states, the number of people who can prescribe pain medication is extremely limited. In trying to prevent harming others through addiction, the law hurts people like me who are not addicted and have very legitimate reasons for needing the medication. The cartilage under my kneecap has come apart from the kneecap and I can’t have surgery for it until one month from today (THANK GOODNESS) because my immune system is suppressed and my risk of infection from surgery is incredibly high. I have been walking around on my extremely injured knee for years. Last year, I dislocated my knee at least 3 times and was able to avoid the hospital twice because I could relocate my knee myself and had the medication I needed. This saved me thousands of dollars. And yet I am treated poorly by the law, pharmacists, and my fellow people as a whole.
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.
I don't have juvenile, but I developed pretty serious OA when I was 22/23 in my knee from complications after a surgery so I can only kind of relate. To the young part for sure and the people doubting its real part as well. So for that I sympathize. With everything else I'm in the healthcare field so knew all these points but it's still hard to get the normal layman person to grasp them. Good luck with your journey!
Thank you for sharing this! I knew juvenile arthritis was a lot more prevalent than common knowledge expected it, but I never quite understood how greatly people's lives were affected by it. I think this kind of awareness is a really good thing! If we all just took the time to understand what people were going through I think we'd all end up in a better place.
I love this post. Even though I don't have a firm diagnosis of RA, I definitely have some inflammatory arthritis condition and this perfectly summed up everything I would want people to know. Thank you for sharing it!
This is such a wonderful post! Some of your points are very good for people with any chronic disease (like neurological conditions). I appreciate your point about arthritis being a an auto-immune disease, so you do need medications. Since I have neurological problems, people (who have no business telling me how to treat my conditions) are very insistent that I could manage my conditions with natural remedies. Some are useful, like you said, for treating symptoms, but they don't actual treat the condition.
I am glad that you are still a productive member of society, who reads, writes, and raises awareness!
I also want to add that I really like your point about laws that protect some hurt a lot of us. I have a medication that I absolutely have to have twice a day, but I can't pick it up until the day after I am supposed to run out. So, if no family member can drop my prescription off for me at 9 when the pharmacy opens and wait on it, I can get into a ton of pain. I've actually skipped a few doses here and there on days that I sleep late, so I can have a pill to take while I wait on the next bottle.
Wow! Every point you made are my thoughts spot on! You and I are close in age but my 3 year old daughter is the one who has JIA. I feel for you in every point you made, although I don't know your pain, only the heartache of watching my daughter in pain. Every point you made is how I feel constantly: no my daughter is not too young for Arthritis, I am not using her disease as an excuse to get out of things, every day is unknown with how she'll feel, I have not "stooped" to drugging her vs natural remedies… and yes Mr pharmacist I know what methotrexate is and yes its for her, and yes Mrs Honda Accord lady, I know this is a handicap spot and I have a placard so you can stop yelling at me to move… Thank you for sharing this post, especially number 3. I worry about my daughters future and this is a good reminder that she will be able to accomplish wonderful things in life, even if it is from bed 😉 kudos to you for being an advocate and a role model and for not letting your Arthritis keep you from being successful. Here is my daughters blog http://www.millie-ion.blogspot.com. again, thank you
This is such a great post. I always feel a little funny trying to explain arthritis life to someone new. While atthe time I may be functioning completely normal 10 minutes later I could be stuck in bed due to the pain levels. Every day is a new day. I am sure a lot of people eye roll at that but it's true. It's been an adjustment for sure!
Thanks for sharing this. I had two friends in college (sisters) who dealt with arthritis, but I never knew a lot about it. Always good to learn!
I was diagnosed with RA when I was in my mid 30s. I am now in my mid 50s and I sure can relate to everything you say in this article. When they changed the med laws…it did not leave us much choice…but we have to deal. Each day is a struggle. Thank you for this article. There are so many who just do not understand what we go through on a daily basis!
Very well said! I hate to image what you are going through. I wasn’t diagnosed until 40 but my doctor says I have probably had RA since I was 21 when the Vitiligo first showed. Just didn’t get severe until later. I do the chemo treatments and live life as best I can. Most days are great but I am thankful for understanding family, friends , and co-workers. But I do so love when you tell people you have RA and they immediately say oh I have that or I know someone with that…but have no clue what an autoimmune disease is!
Yes! How crazy is it that they know what it is but don’t know what an autoimmune disease is? I’m glad that my word can help other people understand, but also that I am not the only one out there experiencing it.