Why aren’t there more sickle cell groups?

June 21, 2011

sickle cell

     There are support groups for almost everything. There are support groups for cancer patients, for the bereaved and those living with every kind chronic life long illnesses. No one has to deal with any unfortunate circumstance alone. If you want help, look for it and are willing to accept it, you can find it. And, more often than not, you can find help in your area. However, when I looked for sickle cell groups in Michigan, I only found one, the one that I am already involved with. Why? I think it’s because people don’t really understand the grievousness of the disease. We tend to underestimate the effect and toll it takes on the lives of patients and their families.
      I’ve been speculating. We’ve talked about it in our Sickle Cell Parent Support Group but really have no idea why parents will come to the Christmas party and Back to School Rally but won’t attend the meetings to help plan them. The group is supposed to give parents a place to vent frustrations and fears but hasn’t really served that purpose because the group is so small. Parents, for some reason don’t come out to meetings. It could be that they are just too busy. Between work, family obligations and the kids, time is a precious commodity. Still, my fellow support members say, “they find time to come out to the parties.”
      There’s also the fear of being judged. I know I hate to show weakness when dealing with Madison. I try to avoid the dirty looks and the judgements people pass so easily when they THINK they could handle the same situation better. Plus, my pride makes me think and feel like I have to be strong at all times. I’m not always feeling strong though. I am often afraid. My son died when he was three years old and I don’t want to lose Madison. So, that fear is coming from a place I never want to see again.
     Also worth mentioning is the African-American family is very protective of their privacy. “Family business is family business” and “What happens in this house, stays in this house” right? We’ve all heard these sayings. And, when I ask Madi at the beginning of each school year if she will tell her classmates she has sickle cell, she always says, “No.”  I try every year to encourage her to change her mind but, she doesn’t like to be the center of attention. She thinks people will treat her differently which will make her feel like she’s different. And, she doesn’t like to answer questions about her sickle cell. She prefers I answer them and protect her from scrutiny and prying eyes. I have protected her to a fault. So, when she becomes an adult, I imagine it will be hard for her to accept help and support from anyone other than her family. So, the cycle continues. I believe these are the main reasons our Sickle Cell Parent Support Group is so small.
So, first, people value their privacy and feel like they can handle things on their own, no matter how bad things get. Second, pride prevents us from breaking down and asking for help. And finally, there’s not enough time in the day.
What can I do to change that? I can offer and continue to offer support. Hit the contact us link and let us know how we can help and support you.
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2 Comments on “Why aren’t there more sickle cell groups?”

  1. poeticjourney Says:

    Good post, you made some good points as well. I never really talk about my illness when I was younger. I learn to talk about it as I got older. People’s do tend to look at you differently. But we can’t worry about what they think, this our body and our mouth. Nobody can feel or know what we going through. I’m actually doing a paper on why the importance of support groups for families of scd and patients. Its good to know we have someone thats going through what we going through and we not alone. I never realize how important it was to have one. I always had my family and friends to help me when I had crisis. Spiritual family as well as my main family. I’m hoping to bring more awareness to SCD. we need more awareness and support groups. God Bless You and Your little one.. 🙂

    Reply

  2. Sicklecelldiva Says:

    There are many support groups …*smiles*…Just locating them is the problem. I suggest you start with facebook…That social media area is full of support groups for caregivers and people living with sickle cell such as myself, “SickleCellDiva Forever” is my facebook name…and if you like you can email me at sicklecelldiva@gmail.com~ God Bless and Keep Up the Wonderful Job ~

    Reply

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