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Posted on 14. August 2013

Having Friends Who Understand Makes Me Feel Better

By Arianna Kazemi

Having a chronic illness sucks. I wish I didn’t have one, and I wish you didn’t have one either - or more than one if that’s the case. My brother once asked if I had a super power what it would be, and I said I would have the ability to cure people’s chronic illnesses!

However, that being said, I’ve learned that I have to cope with being ill a lot of the time. Sometimes my illness stops me from doing the things I love. But more often I do the things I love and suffer afterward. My mom says I live in the now and need to think more about how my actions have consequences. While the crash afterward is awful, I want to live - and not in a bubble - so I feel the consequences are worth it.

How I feel doesn’t just depend on how good or bad my symptoms are on a particular day. There’s another factor that has a big effect on how I feel, and that’s how I feel about life.  You probably went “Huh?” and had to re-read that sentence! But it’s true: How I feel in general affects how I am feeling. When life feels super challenging, my illness feels almost overwhelming to me. When I am on a high about life, my symptoms seem more manageable. I want to be really clear: It’s not that I feel any better, but my attitude affects how I cope with my illness.

One thing that makes me feel good about life is hanging out and doing things with my friends. Recently, I told my friends about my illness. You might say I “came out of the closet” about being chronically ill. It was hard keeping secrets from people and pretending I was healthy and OK when I wasn’t. Living with a serious illness takes a lot of work and can be very stressful. Life isn’t easy for me; it’s often very difficult. So I think it helps to be truthful with close friends and relatives and use my energy to manage my symptoms and illness instead of stressing about what they think and worrying when I’m always “skipping out” on plans.

I’ve found out that the most important people in my life almost always respond in an empathetic and compassionate way, even when I am worried that they won’t. And when they do that, it makes me feel cared for and supported, and we become even closer to each other. Take for example the One Direction concert I went to last night. The concert sold out months ago, and my friends and I had been looking forward to it for 12 months. When I got my ticket, I felt like Charlie getting the Golden Ticket in “Willie Wonka and the Chocolate Factory”! But, when the day finally arrived, I felt exhausted and like I was getting sick. I needed to rest and do my SubQ treatment before the concert, which would delay our arrival at the arena. As total fan girls, we’d planned to get there hours early, hoping to get a glance of our idols! But my friends understood and came over to my house and waited for me. I expected them to make me feel bad, but they are my friends; they hung out, laughing and playing music.  When I was done, we went to the concert just “on time” and had sooo much fun! It was so much easier telling my friends what I needed and having them understand rather than stressing about what they’d think if we were late.

So, if there are important people you haven’t yet told about your illness and your life with it, I encourage you to do so. And I hope you will write about your experience in a comment below!

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Comments (4) -

Judy Gafford
7:24 AM on Friday, August 16, 2013

Thank you so much for your honesty and transparity. At your young age you are much more wise and savy than many adults who deal with a lot less. May God give you ease with your health problems and strength for the journey He has set before you. God Bless you.

Ida Wagner
12:54 PM on Friday, August 16, 2013

This was great and wonderfully  written! The way you are reflecting over ' Living with our illness and how to cope with our rare primary immune deficiency' taught me how important it is to share- or 'in our way come out of the closet', so friends can understand something, and then understand  how it is to live a life like us. Thank you so much! Bless you! Thank you so much from one in Norway, far away from your country! We do share and have the same challenges, despite the distants !
~  Ida Wagner

Gail
2:20 PM on Friday, August 16, 2013

I agree with you that attitude trumps symptoms many times. You seem to have great friends, But, beyond just telling your friends you have an illness, I'd encourage you to really educate them. I have done my best to explain my illness (CVID) to family and friends, but many still don't get it. I have found that it is an ongoing process of education.  

Becky
11:26 AM on Monday, August 19, 2013

"It’s not that I feel any better, but my attitude affects how I cope with my illness."  Kudos to you in dealing with your illness.  While my chronic illness is not immune related, my way of looking at it is only worded differently from yours: I can let my illness run my life, or I can live life to the fullest I am able.  There may be days when you truly can not participate in activities, but good for you in deciding what is worth the consequences.

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