When sickle cell management feels like a constant battle
Though essential, self-advocacy with sickle cell can be exhausting
Why does everything have to be a fight? I ask this because the past few weeks have been frustratingly difficult for me.
I recently had to drive to a different county to sort something out. On the way back, I got stuck in traffic. A drive that was supposed to take an hour and a half ended up being nearly five hours. As if that weren’t bad enough, I experienced a sickle cell crisis on the way home. My saving grace was that I’d brought my pain relief medication with me, so I could take it as soon as the pain started. Without it, I suspect the trip would have resulted in me being paralyzed by crippling pain, miles away from home.
I was supposed to go to a show that night to support a friend, but unfortunately, I had to cancel at the last minute due to the pain. It always sucks when I have to cancel plans because sickle cell disease has decided to rear its ugly head and mess up my affairs. It makes me feel like a liability.
And the worst was yet to come
The pain was stubborn, lasting just over two weeks. After about a week of trying to manage it with home remedies, my patience was wearing thin. I couldn’t take it anymore, so I decided to check in at the day unit at my hospital here in the U.K., for treatment of acute pain. Sadly, on the days I called, the unit was closed due to a doctors strike. My only alternative was the emergency room.
Doctors strikes are a contentious issue here, and I want to clarify that I support doctors and believe they should receive equitable pay. But by that point, I had been in excruciating pain for almost two weeks and was running low on my pain relief medication. I had two choices: Continue battling the crisis at home, even though nothing I had done had helped, or go to the ER.
I’ve previously written about a few negative experiences I’ve had in the emergency room, so it should be no surprise to regular readers of this column that I decided to stay home.
Isn’t it awful that, as a patient, I can be so terrified of the ER that I prefer to remain at home in agony? Isn’t it alarming that I believe I have a better chance of conquering a crisis by myself than under the care of hospital staff? Sickle cell patients should be able to trust that they’ll receive adequate and timely care in the ER.
The fight continues
The crisis eventually subsided after a few weeks with the help of a blood transfusion. But two days later, my period started, triggering another crisis.
All of this meant that I was using more of my pain relief medication than usual and would need to refill my prescription sooner than expected. However, my general practitioner (GP) rarely authorizes early refills. And even when I refill my prescription on time, the medication is often out of stock. Most months, I find myself battling my GP, the pharmacy, or both, to get my medication. This time was no exception.
Additionally, I’m planning to travel abroad in December, which requires a lot of preparation to ensure that I fly safely with all of my medical equipment and medication. Not only do I need to fight for approvals to bring these items, but I also will need to rent batteries for my portable oxygen concentrator to cover the 18-hour flight. It’s an “illness tax” on traveling, as my partner accurately describes it.
Honestly, I’m fed up. Living with sickle cell disease involves so many battles, and I’m tired of it. I wish I could just exist peacefully. I don’t have the strength to fight this disease and the various healthcare agencies at the same time. I can offer advice, though: When you interact in any capacity with people who have chronic conditions, consider the ways you can make their lives easier — because they’re likely already battling so much.
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.
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Comments
CP
Keep up the fight you are doing an amazing job. I’ve been reading these posts for quite a few months now. I have a daughter with SCD who finds it quite difficult to talk about. All the posts by yourself, Dunstan and Tito have really helped me get a better understanding of what it means to live with SCD and how I can help my daughter through this. Thank you all for being so open about how this impacts your daily lives and suggestions how family, friends and health care professionals can help make your journeys a little easier. You really are making a difference. Take care
Nsombi
You are a blessing to those of us who read your posts. I've spent many hours caring for my grandson who goes through many crises yearly. Love, prayers, hot compresses, hugs anf more love seem to help him through. He's 14 year old and I thank God for him. He's such a light and joy to us.
Your posts help me to understand the illness and the frustration he feels from time to time.
Keep pushing forward and continue to share your triumphs and despair with your community. I pray for blessings in overflow for you as you continue to bless others with your experiences.