In the Meantime

By Sophieh

2 min read

My mom is going on vacation, and she asked me to stay at her cottage while she is away, to take care of her dog.

I told her I would be happy to do so, and this evening she texted me and told me she put fresh sheets on the bed and cleaned the house.

My first reaction was to ask her if she had made up the bed upstairs, and she said yes.

I asked her if it was alright for me to make up the bed downstairs because I wouldn’t be able to make it down the stairs in the morning.

It struck me all of a sudden how crazy that is. I am twenty-one, and I can’t make it down the stairs in the morning? It feels unreal to me.

I have a hard time understanding how it happened.

Are my RA challenges my fault?

The truth is, I feel that it is my fault that things have gotten so bad.

I know I am a difficult patient, as in I make things very difficult for my doctors.

I have refused many medications because I will lose my FAA medical certificate if I take them. That means I could no longer fly.

My doctors are continuously exasperated with me, because I am running my own agenda, and it seldom lines up with theirs. When I tell them I would rather die than have aviation taken away from me, they tell me that RA won't kill me; it will simply cripple me to the extent that I can’t move.

I like to joke that as I work in hospital pharmacy, surely I know how to end my misery if it got to that point.

They don’t find this very funny, and honestly, neither do I.

What do you do in situations like this? Is your functionality more important than the things you love the most, that make you who you are? Am I going to regret making the decisions I've made when I am older? I really don’t know.

Should I disclose RA status?

I never tell anyone I have RA. My family are the only people that know.

I have always suffered in silence, and I have made up stories to explain my various surgeries at work.

I feel like I am embracing my disease if I tell people.

I am also scared to death of people's assumptions if they find out.

Once at the ED, after an accident unrelated to my RA, my room was right by the nurses' station.

I heard one nurse say to another, “oh that poor young girl has RA.”

The other nurse said, “well, I have a positive ANA and my doctor told me I have lupus, these diseases aren't really real, the doctors tell everyone they have them nowadays.”

I felt sick to my stomach overhearing this conversation. Is it a good thing to tell people? Is it my obligation to educate people?

I really don’t want to though, I have no interest in talking to anyone about it.

This is not to say that I am miserable and everything is bad. Much of my life is amazing, and my family is the absolute best! These are just some of the things that have been on my mind lately. What's been on yours?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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RHall Community Admin
Hi <inline-mention username="Sophieh" user-id="4195363"/> - so great to see you're writing again. I think a lot of what you wrote others will relate to here. I thought some of your questions and preferences around sharing your RA status is interesting. Ultimately I don't think there is a right or wrong answer. It's a very personal decision. I think your personal preference not to really talk about it with others is perfectly okay. I completely understand why that is. On the other hand your family knows which makes it seem, to me, that you're okay with others knowing if you feel that you can trust them and you they won't look at you differently. The other thing that stands out is you mentioned being a difficult patient. I understand if you feel guilty about that. But, to me, it sounds more like you are very strong at advocating for yourself and your own needs. Which is awesome to see at any age - let alone for someone so young. So if you ever wanted to reframe that, it could be looked at as something you can be proud of. That you are comfortable stating what you need. Thanks so much for sharing! Love your life updates and thoughts. Curious what others have to say too. Warmly, - Reggie, team member
1. Sophieh Member
 <inline-mention username="RHall" user-id="3226625"/> thank you so much for you advice and support! It means a lot and really helps me think more clearly about things.
Richard Faust Community Admin
Hi <inline-mention username="Sophieh" user-id="4195363"/>. First, let me echo Reggie in saying that it is perfectly acceptable for you to advocate on your own behalf and to guide your own treatment. Also, what and how much to tell others can be tricky and largely depends on individual circumstances. This article collected thoughts from community members on how much to share: <a href='https://rheumatoidarthritis.net/living/community-thoughts-how-much-to-share' target='_blank'>https://rheumatoidarthritis.net/living/community-thoughts-how-much-to-share</a> and this one from our contributor Kelly Mack (full disclosure - I'm her husband) looks at what to tell others: <a href='https://rheumatoidarthritis.net/living/what-tell' target='_blank'>https://rheumatoidarthritis.net/living/what-tell</a>. The main thing that jumps out to me is you do you. Also, you mentioned concerns about medications and the FAA. Do you mind if I ask what treatment you are on? I see that medications used for cancer treatment that also are used for RA can trigger a Do Not Issue/Do not Fly issuance, but these are typically used in much greater amounts for cancer. Your doctors should be willing to work with you to try find a treatment that can both control the RA and permit you to fly. As the patient, you get to set the parameters. Wishing you the best. Richard (RheumatoidArthritis.net Team)
1. Sophieh Member
 <inline-mention username="Richard Faust" user-id="3227544"/> thank you for the links, I will definitely check them out. I’m on imuran now, which is ok to fly on. Unfortunately it just isn’t doing anything. My doctor has suggested options for pain, most of which don’t fly, including high dose steroids. The AME also told me uncontrolled disease is enough to not issue a new medical. It’s pretty touch and go right now, but we are working on it. 
2. Richard Faust Community Admin
 Hi <inline-mention username="Sophieh" user-id="4195363"/>. I don't know if you have already seen this, but thought you might be interested in this FAA document on arthritis assessment: <a href='https://www.faa.gov/about/office_org/headquarters_offices/avs/offices/aam/ame/guide/media/c-caciarthritis.pdf' target='_blank' rel='noopener noreferrer ugc'>https://www.faa.gov/about/office_org/headquarters_offices/avs/offices/aam/ame/guide/media/c-caciarthritis.pdf</a>. In particular, is the list of acceptable medications. I don't notice Imuran on the list, but this just may be a function of it being a pretty uncommon RA treatment. Considering that disease control is an issue you may want to ask your doctor if something else on the list may be more appropriate/effective in helping you achieve control. In addition, I found this article on azathioprine (Imuran) for RA where the author concludes "Azathioprine appears to have a statistically significant benefit on the disease activity in joints of patients with RA. This evidence however is based on a small number of patients, included in older trials. Its effects on long‐term functional status and radiological progression were not assessed due to lack of data. Toxicity is shown to be higher and more serious than that observed with other disease‐modifying anti‐rheumatic drugs (DMARDs). Given this high risk to benefit ratio, there is no evidence to recommend the use of azathioprine over other DMARDs:" <a href='https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8406472/' target='_blank' rel='noopener noreferrer ugc'>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8406472/</a>. Hope this information is helpful and you can soon get better disease control to put your mind at ease. Best, Richard (RheumatoidArthritis.net Team)
Erin Rush Community Admin
I can't really add to what Richard and Reggie already wrote, but I have to admit I was happy to see a new piece by you, <inline-mention username="Sophieh" user-id="4195363"/> ! You have a wonderful way with words and I feel like I am really getting into your lived experience when you share these pieces. That said, I have no words of wisdom or advice to offer. Just support and appreciation for your writing. And, as you already well know, ultimately, YOU have the final say in how your treatment goes. Best, Erin, <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team Member. 
1. Sophieh Member
 <inline-mention username="Erin Rush" user-id="3164667"/> thank you so much for your kind words. I never thought I’d be writing anything on here, but I actually kind of like it! Thanks for your support!
forevrblu Member
I am so sorry. RA is not fair and it does steal a bit of who you are. I didn’t tell my supervisor about my illness until I could no longer hide it. I hope your doctor can find medications that will allow you to continue to fly. You don’t need to tell your job unless you want to or if you need to. I once had a nurse, who was doing my intake, bitterly tell me that I was lucky that I could take methotrexate. I swear she referred me to a male provider instead of a female out of spite.
LouTX Member
I was a full time teacher of English and Creative Writing when I received my RA diagnosis 14 years ago. I also have a diseased spine and epilepsy. I had to stop teaching in 2017 because my doctors wouldn’t release me to work after one of my spine surgeries. I was accepted into disability on my first attempt. What I want to say is that when my life seemed to be crumbling around me, I began putting together two book groups from my friends and restarted my participation in a poetry writing group. I continued teaching creative writing for adult ongoing education in my city, which meets one day a week for two hours. My family and my partner have been mostly supportive. They had a learning curve, but they got there, for which I am grateful. I can’t do a lot each day, but over the course of each month, I meet with the book groups on my back porch and the poetry group on Zoom. I teach one day a week for two hours. My point is to consider the things that you can do that bring you joy, and find ways to implement them into your life. This is not a foolproof method to chase away the hard days, but it does give me some a agency over my life. I now know that even if I become paralyzed due to my spinal diseases, I will still have a life to live that meets me where I am today. I wish each of you a meaningful life! 
1. Richard Faust Community Admin
 Hi <inline-mention username="CommunityMember4188093" user-id="4188093"/>. Thank you for sharing this. It is important to remember that the path of life is an unknown, but there are things a person can do to keep making their life their own and one that contains things that give you joy. Please know that this community is here for you. Best, Richard (RheumatoidArthritis.net Team)
Franki King Moderator & Contributor
Sophie, balancing your love of flying with your RA sounds like a difficult choice! It's understandable that you would not want to lose something that's important to you, but it's also important to consider your health and well-being. Ultimately, the decision is yours to make and it's okay to take the time you need to figure out what's right for you. Speaking from personal experience, in a totally different context, I refused medication for a time too. I wanted to heal myself on my own, holistically, and I wanted to sooo badly. For me, the catalyst was realizing that I was so stressed from being constantly inflamed and trying to have the perfect diet/lifestyle for RA. With all the chronic & debilitating stress, I was never going to be able to free myself from the pain. So I took the meds... sadly at that, I cried the first time, but they helped. With my inflammation lower, I can't deny that I feel happier and healthier and most importantly, less stressed. I still take care of myself in my own way but thanks to the meds I feel somewhat like a normal person again and for that I know I made the right choice. I wish you all the best, always. Don't be too hard on yourself and definitely don't feel like you have to talk to people about your RA if you don't want to.
1. Sophieh Member
 <inline-mention username="Franki King" user-id="3167530"/> thank you for this lovely comment. I appreciate your perspective and it’s definitely something to think about!