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What Makes Me Feel Like an Outsider as a Person With Rheumatoid Arthritis

User Profile: Elle22
Elle22 January 24th, 2016

By Alana Schuurs

http://themighty.com/2015/10/what-makes-me-feel-like-an-outsider-as-a-person-with-rheumatoid-arthritis/

"One of my toughest challenges as a young person living with rheumatoid arthritis (RA) is trying to participate in physical activities. Before RA, I never thought twice about exercising. Id just do what everyone else would do. If anything, I used to complain about going for a run or doing push-ups because it felt like too much of a bother.

With rheumatoid arthritis, trying to participate in a physical activity is one of the areas where I feel like an outsider the most. I need adaptive equipment to use most machines at my gym. Since the joints in my hands swell with exercise, I have to wear compressive gloves most of the time. My feet and ankles are often strapped or I use an ankle brace. Its incredibly hard not to look around and see other people my age exercising easily and not feel different.

Theres no way to sugarcoat it — it hurts badly to know what I can do physically is limited not by how hard I try or what work I put in, but by a condition beyond my control. Sometimes Ill overhear someone complaining about exercising, and I feel so angry they cant appreciate the gift I believe they have. Then I remember I wouldve done the same before RA, too.

Feeling like an outsider while trying to exercise really came to the fore for me when I told my trainer Id come to his boot camp. He didnt handle it well and basically told me I was too disabled to attend, but hed try to make it more disability-friendly. Right there was proof to me I was different, and that my difference was not OK to the point where I was excluded. I got upset. I cried. Then I handled it like an adult — I talked to my trainer openly and honestly about what it feels like to be excluded when you have a disability. Fortunately he understood where I was coming from, and I was invited to next boot camp.

While it was nerve-racking to turn up to a group exercise situation, it went well. I managed what I could and tried to adapt what I couldnt do so I was still participating. A couple of months later, there are still moments during boot camp where I feel like an outsider, like when others sprint and I can only walk, or where I need help just to get my gloves off. However, exercising in a group has also shown me Im not the only young person struggling with a physical or mental health condition. Theres something amazing about suddenly realizing another person is walking alongside you because theyve had a rough day, too, or talking to another person who is fighting a battle of their own.

What Ive learned is that the comparisons dont work. Every person is on their own path. While mine might include more adaptive equipment or a different way of exercising, those tools allow me to be included in physical activities. And really, if those adaptions are what allow me to be included, then they dont ever truly make me an outsider, do they?

For anyone else who feels like an outsider when it comes to physical activity participation, heres what Ive learned that might help you:

Making comparisons between yourself and other people can be detrimental. Focus on your strengths and goals, and build on these instead.

Keep goals practical/functional. Having goals based on increasing weights and repetitions tends to lead to disappointment for me. Making goals around things that can increase quality of life can lead to a real sense of achievement. For example, one of my goals was to be able to shower while standing up.

Recognize that many people face challenges when it comes to exercise, whether physical, mental or financial. You are not alone in that.

Embrace adaptations, whether it be using adaptive equipment or changing how you try something. This will most allow for inclusion in physical activity.

Be prepared to provide some information to others about your condition and what you can and cannot do. This is particularly important in a group exercise setting to help ensure you can participate safely.

Accept help if it allows you to be included. I still struggle with this at times, but letting another person assist is OK, and sometimes its the only way to manage with a disability.

This is what I wish someone had told me when I most felt like an outsider, and it might help others, too: I dont see you as any different than anyone else. Its OK you cant do what everyone else can. What matters is doing what you can."

http://themighty.com/wp-content/uploads/2015/10/image1-11.jpg

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User Profile: Anomalia
Anomalia February 15th, 2016

Interesting article! Is this how you feel, as well?

2 replies
User Profile: Elle22
Elle22 OP February 16th, 2016

@Anomalia I felt more like this in regards to school. I'm an art major at university so that can involve big physical tasks as well as minute control of body parts. So when the body is being uncooperative, that can be very frustrating. I've been able to navigate this by being open and communicating with my instructors. This can involve making changes like using a standing wheel instead of a kick wheel for ceramics, extensions on projects, learning other ways to use tools, etc.

As far as being physically active: after I got so sick I was completely debilitated, I came back into exercise with things like yoga and dance. Yoga is all about listening to your body so that was great. Both dance and yoga were things I had never really gotten into before, so it was nice to try something new and not have the past not-sick me to compare to.

1 reply
User Profile: Anomalia
Anomalia February 16th, 2016

@Elle22 - It's so great to hear that you have been able to get the necessary adaptations at school and that you have found exercise that works for you and lets you listen to what your body needs. That's really inspirational and just wonderful.

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