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Disabled Seating and Me

Disabled Seating and Me

Since suffering and being diagnosed with Rheumatoid Arthritis (RA) and Systemic Lupus Erythematosus (SLE), I tend to sit in the disabled seating area on trains and buses but why?

I wake up on a morning, after getting 2-5 hours sleep if I’m lucky, I lay there having to rest because I’m already exhausted. I slowly sit up, each and every joint screaming at me for doing so, I will myself to stand up, get dressed, make myself look presentable and ‘healthy’ and take my medication. I already want to go back to bed.

I slip my shoes on, and hide the pain, stiffness and tears with a smile and start slowly walking to either the train station or bus stop depending on where I am heading. I sit there and wait, trying to warm myself up, hoping that maybe my joints will stop hurting. The bus or train finally arrives and again I have to will myself to stand up because my joints have gone stiff from sitting from sitting but standing causes me serious pain. I get on the train or bus and sit in the disabled seating.

More people get on and then the looks and whispered remarks start, why? Because to them I just look like a normal healthy person, I’m probably just being lazy, there clearly isn’t anything wrong with me.

They couldn’t be more wrong. I sat there wanting to cry because of the pain, because of how these autoimmune diseases have changed my life because I’m no longer healthy or ‘normal’ but they can’t see that, so it can’t be real.

One of the most difficult aspects of living with these diseases is the people that don’t understand them or what they do to the people suffering.

They’re not the ones suffering, we are. They’re not the ones having to inject Methotrexate and/or take piles of medication, we are. They’re not the ones crying being closed doors because an illness has taken over their life, we are. They’re not the ones struggling to hold onto friendships because it’s difficult to get out and about, we are.

There is so much more to these autoimmune diseases that people don’t know about or don’t understand, so when you look at someone and they look perfectly healthy, don’t judge because you don’t know.

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.

Comments

  • Sallygal
    2 years ago

    Hi AlexLoui,

    I totally understand what it is like to get “those looks” from others who see you as just another lazy young person wrongly taking a disabled persons seat (or parking place, etc.)

    I have had multiple sclerosis (MS) for about 25-30 years; I was officially diagnosed with RA about 1 /12 years ago (after 10 years or so being classified as having inflammatory & erosive arthritis).

    I have always struggled with this problem of being viewed as a normally healthy person who took advantage of the open disabled bus or train seats, or here in car-centric California, disabled parking spots. Since my earliest MS symptoms included vertigo, ataxia (incoordination), tremor and some weakness, my gait is easily mistaken for that of a drunk or a person who is “high” on drugs.

    I found that if I used a cane, a crutch or walker (all of which were preferable to NOT using a walking aide since they all helped me keep myself upright and walking a better. Ironically, after I started this, I never received another verbal criticism or sidelong glance from the ‘like to criticize and judge others” club.

    I realize it is not always easy to do this at first.It helps to think of these things as tools; tools that help of live our lives the way we want to! I encourage you to try it!

  • AlexLoui author
    2 years ago

    Hello,

    I have and use a cane but unfortunately I think that it upsets me more as it makes people ask questions which then leads to “You’re too young” or still “but you look fine” – I did have a conversation with one woman the other day who questioned me on it though and she was very kind about it and was just curious but unfortunately most people are not, I still use my cane though if my wrists aren’t too bad as it’s very helpful when walking 🙂

    I was diagnosed with RA and Lupus about a year ago and I’ll be 19 next month, it’s been a tough year but like all these wonderful warriors I know at some point I’ll get to a sage I’m okay with, I hope you’re doing as good as you possibly can be x

  • wannabe-healthy
    2 years ago

    Hello AlexLoui,
    At least on here, we do understand. It’s good to go to a place, even though it isn’t like having a personal friend visiting, so we can share our fears and strengths. I’m new here, but not new to RA. Boy has it left some physical scars on me, but in the worst way, emotional scars.
    I’ve had this disease for 18 years, and even though I have a better understanding of what is happening to my body, and I stay informed hoping to find out there’s new hope for us, I feel totally frustrated because I can’t wrap my mind around it. I’m beginning to show the signs physically, but I will still put on a smile and push forward. It is better than walking around like a victim who is defeated (which is really what I feel like). Teaching elementary school was a dream that I made happen. I became a teacher at 40, went back to school part time, and it took me 7 years. (Understand however, this was BEFORE RA). I got a job quickly, because I made the Dean’s List all but 1 semester, I had already raised 2 children in public schools who were by then both in college. I also worked while going to school, maintained a home, stayed as close as I could with my children who were away at college, kept my marriage a priority to a wonderful man, stayed close to my friends at church and my closest friend since high school. I even ran 4 miles a day. Life was full and rewarding. I was so happy teaching, because I love children (especially 4th graders), and because I was happy and I loved teaching, I was rewarded with the Sallie Mae First Year teaching award, one year awarded Teacher of the Year, and managed after my third year of teaching to receive National Board Certification. It was such a rewarding time and I wouldn’t give anything for that time in my life. It also was one of the worst times. After teaching 5 years, one day I almost couldn’t make it to the bathroom in the morning. Finally, I saw my family doctor who did blood work, and before I could even blink, I was sitting in a rheumatologist’s office. Eventually I found out I had seropositive RA, Fibromyalgia, and more diseases have been added over time. I was started on Remicaid and Methotrexate, and stayed sick most of the time. My biologic meds have been changed and I now take Orencia, Arava, and Plaquenil. I poured my heart out to my closest teacher friend, but time changes and she moved on, and I ended up with new co-teachers and principal. They had no clue about RA and I was targeted as a lazy, drug user (even though I would not take pain meds while teaching). They did not know and did not want to know, so I struggled the last 3 years, at which time I had to leave my job as a teacher after 10 years. I was ignored, gossiped about, and told I was not supported by them. That’s been 11 years ago and I have forgiven them, but the pain will not go away. I focused on my students, loved them and did the best I could. I wouldn’t change that I became a teacher for anything, but I’m not the same person as I was before RA. There have been joys and tears since, but I am blessed with 4 grandchildren, who have brightened my post-teacher days.
    I guess what I’m saying is there is no way to help anyone understand what we go through, the pain, insomnia, fevers, fatigue (those who love us do make an effort to understand). It is true that we understand now and can be there for those who have RA (or other invisible diseases). Other than that, we fight our own personal battles and take one day at a time, clinging to any good days we have. I guess I will continue to move forward as long as I can.
    Know that I understand, I know how special each one of you are, and I know our lives are not easy. I don’t want anyone to get this disease, and I hope to be a friend to many of you who have it.
    We are strong! We have to be!

  • AlexLoui author
    2 years ago

    Hello,

    Sorry for the late reply! I’m sorry to hear all that, I was only diagnosed last year and I’ll be 19 in May and it’s already changed my life so much, I wanted to work with animals but before I was diagnosed I basically couldn’t walk so couldn’t complete my Level 3 due to not being able to do the practical side of the course. I’m now thinking of going back to college and doing A levels instead to get into social care/work, it’s been a difficult year but I’m slowly realising that my life doesn’t have to stop because of these problems it just has to change. I’m lucky enough to have a partner that tries her hardest to help and understand what I’m going through and my mum also has RA so she helps me a lot with how to cope with people that don’t understand or people who are not willing too etc.

    Thank you for your comment! From reading it, it sounds like you’ve gone through heck of a lot but you’re still standing and fighting 🙂 I hope you’re doing as good as you possibly can be x

  • 2 years ago

    Hi AlexLoui,

    I too have just come to my 1 year point. And, just when I think I’m starting to sort of understand this disease, it throws a curve ball at me. I have managed my RA very well, so far, without pharmaceuticals. But still, I deal with the heavy emotional aspects of the disease. It’s almost like you have become someone else. Not all of the changes are bad. But, there are definitely a lot of changes. Even your closest friends in the world might not understand, much less the strangers around you in everyday life.

    This might make you feel a ‘little’ better, and is a true story.

    When I was in a pretty bad place about 6 months ago, I was roller skating with my daughter. We go at least one day a week and it was one of the things that I could do, barely, if I wasn’t having too bad of a day.

    So, on this particular day everything hurt, but as long as I didn’t actually pick my skate up off the floor and just shuffled it, I could manage. As much as I wanted to, I couldn’t keep myself from hunching though, (fight or flight mode) and I know I looked miserable.

    So, as I was skating there was a boy and two girls at one end. And, every time I passed them I could hear the boy say something, but I didn’t know what and I would just kind of smile. Finally, as this went on, I realized that he was making fun of me to impress the girls he was with.

    So. I can honestly say that I never ever remember being picked on at any time in my life, until then. And the funny part is, although I had already lost some weight from the RA, I’m someone who works out, and in fact was a police officer for 14 years. So, I wouldn’t be my first choice to pick on. But, I feel that because of the fact that I was basically running in emergency mode, this 14-15 year old kid thought it would be real cool to make fun of me.

    As soon as I realized what he was doing I started looking directly at him as I went by, trying to let him know that I wasn’t going to stand for it. I finally had to approach him and ask him, face to face, if there was something I could do for him, which effectively ended his fun.

    Later, he came to where I was sitting and apologized. But the whole incident was a wake up call. Like ‘hey, things are gonna be a little different now buddy boy!’.

    I’ve also lost some good friends, due to RA. And, I’m just starting to learn that, unless someone has a genuine interest, the less I share about my disease, the better things seem to go. People just plain do not understand. And well….neither did I. And maybe that’s one of the reasons that RA is a part of my journey.

    Next time you feel the judgement of those around you, remember that you have been given the gift of understanding what it’s like to live with a debilitating disease. Can you imagine, now, if you were never given this gift of understanding? That is a part of this disease that I can’t give back. Empathy.

    Some of the lessons that we’re given in life are really, really hard earned.

  • 2 years ago

    No. No prescriptions for cannabis yet. But, the legality of it continues to expand. More than half of the US states have legalized medical cannabis, 8 have legalized it altogether for anyone. Canada is making it legal for everyone in July 2018 and several countries have or are working on legalization. Check your local laws. Might be something for you to watch for as things move forward.

  • AlexLoui author
    2 years ago

    If it was legal that wouldn’t be too bad, do you just have to get it yourself or is it like a prescription you pay for?

    It’s just I pay for a pre paid prescription card which is £114 for a year and I get everything.

  • 2 years ago

    A gram of the oil can be spread over a week and make a huge difference. I figure it costs me about $4.00 a day, or around $120 a month. Worth every cent.

  • AlexLoui author
    2 years ago

    I don’t think cannabis oil is legal here haha bit of it was it’s definitely something I’d consider, I have heard a lot of positive results from it. I have heard it’s very expensive though?

    I’m currently on self injected Methotrexate once a week and then tablets for the rest of the week, it’s very tiring

  • 2 years ago

    At any rate, I am so very sorry that you have to deal with all of this. It’s a very heavy load to bear, for anyone. As I read your story, I could remember when all of my days were exactly like you were describing. It’s so difficult to explain to people that haven’t been there. Like you said, many of us haven’t reached the point where we physically look ill, and people can’t wrap their mind around that.

    I can’t give medical advice. And, I’m not going to pretend to know all of the answers (Because clearly, I do not). But, personally, cannabis oil (Full extract of the whole marijuana plant, not just the CBD) has completely turned me around and brought me back to a pretty good state of health. It doesn’t cure me completely, and if I stop taking it, I will become symptomatic again in a matter of days or weeks.

    I was really sick mid 2016 and was constantly researching for non-pharma treatments when I came across information that cannabis oil could be used to help treat RA. After I purchased some pre-made cannabis oil (again….not the CBD oil that you see advertised as legal everywhere) I began to get better VERY quickly. So quickly in fact that there was no way in my mind that it was not going to completely cure me.

    Well, almost a year later and I’m still not cured. BUT, I have my life back. My nodules shrank and went away. My feet mostly look like my own again. No more night sweats or fever and, generally, no more pain in walking. In fact, I’m back to being able to run as much as 3 miles on the treadmill. For me, it has been a God send. It is a real heavy lifter, but at the same time it treats you with kindness and is works very gently. Do use caution though, if you try this. The oil is very concentrated and you have to build up slowly starting with a drop of oil the size of a half grain of rice.

    I use an ‘Indica’ based oil that I can take an hour before bed and it literally makes me sleep 7-8 hours and wake up actually feeling rested. On waking, I feel rested with no signs of any kind of intoxication at all.

    So, not sure if that is an option for you. But, if so, might be worth a try. Yes, I know what we’ve been taught. But…we have not been told the truth. It truly does work wonders at beating RA down, as well as other autoimmune diseases..

    Unlike other sites, this site has been very tolerant of talking about these options and there is actually a forum that discusses cannabis here: https://rheumatoidarthritis.net/topic/medical-marijuana-cannabis/

    I hope some of this helps. If nothing else, I hope you find strength by knowing that you are not alone in your struggle. there are millions of people just like you and me that are going through the very same thing. Amazingly strong people, just like you. 🙂

  • AlexLoui author
    2 years ago

    Hello 🙂

    Yes I have learned that a lot of things have to change haha…When I was diagnosed with RA and SLE I was in my third year of college, I got so bad, I had to leave early unfortunately. I lost all of my ‘friends’ that I had, or where they ever really friends? Having these autoimmune diseases has definitely made me take a step back and realise who is actually here for me and who isn’t which is good. I’m lucky enough to have an amazing fiancée that takes care of me etc.

    When I hear people making remarks I try not get angry and I try to educate them on the illnesses and what they do. To them I’m a healthy 18 year old with no worry in the world and I know that’s what I look like, I don’t expect anyone to understand what it could possibly be like I just wish people would ask instead of automatically judge, it would make it so much easier haha.

    I’m currently on about 6/7 medications, which I still struggle to deal with but I know I’ll get there eventually:)

  • Eebtool
    2 years ago

    AlexLoui,
    Hello and greetings,
    Thank you for sharing your story. There are many others here that have shared the same feelings of somehow being seen as someone they are not because of the way RA affects daily life. It is good to hear that you make the best of things to continue on with the daily grind and have not given up.
    Edward.

  • AlexLoui author
    2 years ago

    Hello Edward,

    Thank you for the Reply! No matter how much I want to give up, it isn’t an option for me and never will be. It’s extremely difficult as most people who have RA will understand. I was only diagnosed with RA May Last year so it’s been a difficult year and I’m sure there are many more to come but I won’t let them beat me 🙂

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