I’m Happy I Haven’t Been Hospitalized in 2 Years
In September, I celebrate two years since my last serious sickle cell crisis and hospitalization. I’m so happy to be in this position, because I don’t take my health for granted. I know how bad sickle cell can get, so the fact that I’ve stayed healthy for so long feels like nothing short of a miracle.
Many factors contribute to my health, including my frequent red cell exchange transfusions. I started the transfusion program in 2019, and it has worked wonders to reduce my symptoms.
I also must give a lot of credit to my family and friends. I have an amazing support system. I’m so thankful for the people who make my health their priority, whether I like it or not. From constantly checking to see if I’m hydrating and eating a balanced diet, to the ever-present help they offer whenever I’m in pain, I cannot fully express my gratitude.
Going so long without being hospitalized is a great thing. However, to me, it is also a Catch-22.
I love advocating for my fellow sickle cell patients. However, I occasionally wonder if I’m “qualified” enough to speak on behalf of others who may experience greater difficulties when dealing with sickle cell.
My fear of not being sick enough isn’t new. One of my earliest memories is from when I was about 7. Every year, I looked forward to a Christmas party my hospital organized for the kids under their care. However, one year, I was only infrequently hospitalized, so I didn’t receive an invitation to the party. Upset, I asked my mum why. Trying to comfort me, she told me it was because I wasn’t sick enough. I know she hoped I would be grateful not to receive an invitation, but instead, I felt like an outcast, almost wishing I was sicker so I could be included.
Nowadays, I do not wish to be sicker in order to fit in. However, I occasionally feel out of place. At times, I feel like I’m not sick enough to relate to my fellow sickle cell patients, and yet, I’m also not well enough to relate to those without sickle cell.
This isn’t the first time I’ve reached this milestone. This time around, however, I’m not counting down the days the way I used to, at least not as publicly. I’m aware that many people may be happy for me and would want to celebrate with me, but I fear being perceived as boastful.
Irrespective of these thoughts, I’m happy this milestone is approaching, and I pray I’ll be able to celebrate many more years hospital-free.
If you have sickle cell disease, do you ever feel like you don’t fit in? What’s the longest you’ve gone without being hospitalized? Please share your thoughts in the comments below.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.