Ankylosing Spondylitis Uncategorized

If you think you’re tired of listening to me talk about my chronic illness, just imagine how tired I am of having it.

10 Things I want to tell people about chronic illness

REPOST: I wrote this list a year ago and shared in on Instagram, and it still resonates so much that I thought it was the perfect piece to launch my blog πŸ™‚

I have a feeling that all of us with chronic illnesses feel the same way- I don’t want people around me to think of me as the girl who only talks about her health issues, but at the same time how can I not talk about something that has such a huge impact on my life, and something that I so desperately want others to understand? These are 10 of the things I want to tell people everyday about my life with Ankylosing pondylitis:

1- I want to talk about how even when I look fine, I might be in pain. And even when I’m not in pain, there is a good chance I’m mentally struggling to cope with all of the different things happening in my life.

2- I want to talk about how afraid I am of getting sick because my immune system is compromised from the scary medication that I’ve been put on to manage my disease.

3- I want to encourage medical professionals to explore the field of rheumatology, so that when I need to go to the doctor I don’t have to wait 6 months for the next available appointment.

4- I want to explain that arthritis isn’t just when old people’s joints start to hurt- arthritis is a condition that is so much more than that, and can affect people at any age.

5- I want to SCREAM AT THE TOP OF MY LUNGS about the importance of affordable healthcare for all, and adequate coverage for people with pre-existing conditions.

6- I want to tell people to love, care for, and appreciate their healthy bodies, because I would give anything to have one.

7- I want people to understand that sometimes I need to do what is best for myself, my health, and my body, and I’m always worried about hurting someone else’s feelings or disappointing them by having to say no or change plans.

8- I want to tell people that there is no guaranteed treatment or cure for my disease, and that what works for one person may not work for someone else.

9- I want to tell people that their compassion and understanding is more useful to me than their treatment recommendations. I would rather have you ask questions and learn about my disease than tell me to try drinking more herbal tea or do more yoga.

10- I want everyone to know that I am so thankful that medication is working for me, but it doesn’t mean that the impact of my disease on my life is gone. I always wonder how long the medications will work for me, whether or not someday I’ll have a severe reaction to them, and what my future will look like. I try to live in the now, but the fear of what the future holds always exists.

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