ISOLATION & STIGMA
Stigmatization of people living with sickle cell disease has been known to have/cause extensive health issues like depression, fear, delay in diagnosis and poorer treatment prognosis and when adults with SCD experience pain that requires emergency medical attention, this also has been known to be the moments when they most feel isolated and limited in independence.
The disparity in illness issues includes a combination of cultural differences, education, exposure, discrimination, stress, stigma and social marginalization. Family members also can have experiences living with the stigma of SCD as those affected within their family. In my family for instance, and for my brother in particular, the associated stigma he felt was almost as bad as having the disease itself because it spilled over to his friendships and relationships. I think this contributed in large part to why he was almost overly social and going at 100m/p.h with activities lined up pretty much every weekend. He never liked to feel isolated because of his condition and so even when he had no pre-planned events to attend, he would still get up and go to the movies,visit with his friends or as he would always say to me 'going to see what's happening in town'. The stigma he felt, I can say with a great degree of certainty was more internalized than externalized because for one, he never liked to feel socially excluded or discriminated against by virtue of being a sickle cell patient and as I've revealed, whenever he had to be hospitalized for pain (for any amount of time), he would never let his friends know but a handful of his close buddies. I remember asking him why he didn't want people to know so they could visit him (because I was worried about him being lonely or alone if I wasn't with him) and he would always say 'he just didn't want everyone knowing he was in the hospital'. It broke my heart that he felt the need to isolate himself during those times but I knew I had to respect his wishes.
It is so important for health care practitioners to be increasingly aware and sensitive when caring for people with SCD, morseo from all the different backgrounds because the impact of stigma is similar across diffrent countries despite enormous cultural diversity. Unfortunately, some health care providers may think that SCD patients are exaggerating their pain to satisfy an addiction to certain pain meds, which is also a form of racism if the said patient is of a certain cultural background. Strategies that may help reduce the impact of stigma include counselling, advocacy, therapy and support groups.
If you have SCD, you can also play your part to help discourage SCD related stigma when seeking medical care by doing the following:
a) Be up to date with your medical care and stay informed about your condition;
b) Always work together with your health care team;
c) Document your pain symptoms before and during attempts to manage them with therapy;
d) Create a list of meds you know work for you with your health care team and have a copy with you at all times.
These tips will help you avoid stigma and bias on an individual level and I hope this helps anyone currently suffering from isolation and stigma due to having SCD. Please know that you can push through them and should do so because you are and will always be your own biggest advocate.