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Being Open About Your Chronic Illness

For many of us, our first reaction to being diagnosed with AS or any chronic illness is to try and hide it. We don’t really want to accept that we’ll be sick for the rest of our lives. We don’t want to talk about it because it’s such a big concept to understand. So why would we want to explain it to others who might not understand it or even try?

The diagnosis

When I was first diagnosed with AS, it was a very overwhelming feeling. I was reading every website and article I could find online to try and understand what was going on with my body. I only told my family and extremely close friends. As many of us know, it’s hard for the people around us to grasp the fact that we will be in pain for the rest of our lives.

I don’t blame them, it sounds totally crazy and unfair, but that’s our lives now. The people around us are going to have to get used to it just like we do.

The symptoms take a while to get used to

For me personally, I’m very well aware of my symptoms that I deal with and I’m not ashamed of them. I can’t sit or stand for extended periods of time, I get fatigued very easily, some days I need to rest more than others, and many more.

It’s especially hard as a young person

As a person that’s 23 years old with AS, I find it’s extremely hard for my peers to understand what I’m going through. It’s difficult for them to imagine that I can’t go out and drink anymore, or go for day trips without having to take many breaks because I’m so fatigued. I don’t hold this against them, it’s definitely not what the majority of twenty-somethings go through. Finding people that at least try to understand what’s going on is what’s key to raising awareness and making this a regular topic of conversation.

I’ve found that ever since being diagnosed and starting to open up more and more about what I go through on a daily basis, people ask more questions. They genuinely want to know more about what it’s like to live with AS.

Opening up about your illness

Being completely transparent and open about a huge part of your life can be difficult. It definitely takes some time to get the courage to do so, so don’t worry if you aren’t ready yet. Make sure you do it on your own time when you’re comfortable.

I started my blog in November, but even before that, I was beginning to be more open on social media about my pain. I wanted to show others what it’s really like to live with daily pain amongst other symptoms. The only way for people to understand fully what we go through is to talk about it more.

It’s incredibly freeing

Being able to talk to others about my chronic illness is what’s really helped me to feel more comfortable. I don’t try to hide anything I go through, and it’s incredibly freeing. If I’m going to a friends’ house and I’m in pain, I’ll bring my hot pack. If I’m going out for the day and need help putting my IcyHot patch on, I’ll ask for help.

Normalizing what we go through is the only thing that will help others to understand us and even share what they go through too. Awareness is knowledge, so don’t be afraid to share your story with the people you love.

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

Comments

  • Lawrence "Rick" Phillips moderator
    2 weeks ago

    I was DX’d with type 1 diabetes when I was 17, so I went to school as a senior with my first chronic illness. I did the natural thing I tried hard to hide it.

    That did not work out so well. I was embarrassed by the fact that sometimes i needed help and other times I might not be able to eat, do or behave like others my own age.

    I was so embarrassed, until one day a young lady mentioned she thought that I was being brave and that was attractive.

    Oh yeah I was still embarrassed, but thank goodness a very attract woman said that to me. I got over being different for almost,,,

    well OK for almost the entire rest of that hour.

    Honestly being open is like a social muscle that needs to be flexed, and also encouraged occasionally. 23 years after having diabetes I was Dx’d with RA and 12 years after that AS. By the time it got to AS I had enough experience it was easy to fess to it.

    As I think back on it, I wish I had been more confident at 17. But then again, maybe being stoic got me a cool complement form a very attractive young lady.

    Some thing I still smile about 40 years later.

  • slmsch1
    2 weeks ago

    Hello Mr. Phillips,
    I to went through 26 years of type 1 diabetes starting at age 12, until my kidney failure. I had a kidney pancreas transplant at age 36, but had no Idea at that time about my AS. I was diagnosed when I was about 48 years old. How old were you if you don’t mind me asking when you were diagnosed with AS?

  • Lawrence "Rick" Phillips moderator
    2 weeks ago

    Hello, Slmsch,

    I was 16 when diagnosed with diabetes, (at Disney world), then at 42 I was Dx’d with RA, not at Disney World.

    I was Dx’d with AS at 55, also not at Disney World.

    I hope you are doing well. Diabetes for me like for RA and AS is the result of an autoimmune system gone haywire. I am hopeful someday we will far better treatment for all of these things.

  • Lawrence "Rick" Phillips moderator
    2 weeks ago

    Hello, Slmsch,

    I 16 when diagnosed wiht diabetes, (at Disney world), then at 42 I was Dx’d with RA, not at Disney World.

    I was Dx’d with AS at 55, also not at Disney World.

    I hope you are doing well. Diabetes for me like for RA and AS is the result of an autoimmune system gone haywire. I am hopeful someday we will far better treatment for all of these things.

  • Anthony Carrone moderator
    2 weeks ago

    Great article, @stephaniedipardo. I’m so glad you are comfortable being open and honest about what you are going through now. It can be really hard when friends you’ve had for a long time don’t understand why you can’t do certain things that are “normal”, so having people in your life that take the time to understand is SO important. Thanks for sharing your experiences here and being an advocate for others living with a chronic illness!

  • Steff Di Pardo moderator author
    2 weeks ago

    Thanks Anthony! I’ve always found that just being open with the people you surround yourself with is the easiest way for them to understand. I’m so happy to be an advocate 🙂

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