Those living with sickle cell have their own communities. By that I mean support groups and Non-Governmental Organisations that are solely for the purpose of those living with sickle cell. This is important for anyone living with sickle cell. Knowing and having someone that you can chat to about how you are feeling is cherished. And on the other hand, knowing, you will not be judged precisely because the person/s you are talking to understands because he/she also lives with sickle cell is invaluable.
The reason this is crucial is because sickle cell can be isolating. It can be debilitating. It can be painful beyond comprehension. It can be tiring. It can be lonely. It can be misunderstood. It can be sorrowful. It can be despairing. It can be a constant fight. As such, it is cumbersome to describe all these to someone who does not have sickle cell.
A disease that is volatile will make someone living with it feel all the above and more. It is therefore not surprising that some people who live with sickle cell will lie about having the disease even though there are always tell-tale signs that those who know the disease can see.
What then would make someone who has sickle cell be duplicitous about their genotype or conceal the fact that they have Sickle cell? A simple reply is society. We live in a world that is yes, more enlightened but as a populace we are equally intolerable of people who seem different to the status quo.
According to the United Nations, ‘The Equality Act 2010 and the United Nations Convention on disability rights, disability rights help to enforce, protect, and promote the rights of those living with sickle cell, (Emphasis mine).
I read online debates with some people saying that sickle cell is not a disability. So that we are all clear, this is the definition of disability according to the UN: “Persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.” I believe that sickle cell falls under ‘long-term physical impairments.’ Now, you might not want to see yourself as having a disability and that is your choice.
Society can be discriminatory and the UN states: ‘“Discrimination on the basis of disability” means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including denial of reasonable accommodation.”
Reading the above definition of discrimination, there is no denying that society and by this, I mean, the employer, the company, the non-sickle cell friends, family members, parents, siblings, church, the prospective in-laws, neighbours and the total sum of society at large have made it difficult for people with sickle cell to lead a life devoid of lies.
If someone has sickle cell and decides that they have no other option but to be insincere about their disability, I find it a shame that society has reduced such a person to do such. It is hard enough living with sickle cell, and I can’t imagine what it must be like for someone to deny having sickle cell. I guess, this means, that if that person is in pain, he/she will pretend that all is well when in fact all is not well. The reason for doing so is because he/she wants to belong and this is a poor reflection on humanity.
Someone said to me that she was in an intimate relationship and when her partner saw her having a crisis, he ended the relationship. This is what I mean by society. What if that person with sickle cell was the partner’s brother or sister? Is running away the answer to not understanding something? The person continued by saying next time, she wouldn’t open up on her sickle cell status and in fact she intended to start distancing herself from people that she knows who have sickle cell. I was speechless.
There are many people with sickle cell who are married. I would say that it takes a special kind of man or woman to marry a spouse who has sickle cell. If you are married to someone with sickle cell, or going out with a sickle cell warrior, I say well done. Such a person must be loving and patient. I am also aware of people telling me that they are in abusive marriages or relationships. And by that, I mean physical, verbal, emotional and psychological abuse all because they have sickle cell. Again, I can’t imagine what it must be like for someone living with sickle cell to be in an abusive relationship. However, I also don’t know why someone living with sickle cell will stay in an abusive relationship.
This is the reason why it is important to have people that one can talk to who also live with sickle cell. This will lighten the load, in terms of sharing your experiences with someone who understands what you are going through.
As regards society in general, the UN states that what is needed is awareness-raising, (a)“To raise awareness throughout society, including at the family level, regarding persons with disabilities, and to foster respect for the rights and dignity of persons with disabilities; (b) To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life; (c) To promote awareness of the capabilities and contributions of persons with disabilities.
If you would like to get in touch with me about this article or about sickle cell, do so, via email: [email protected] and do visit my blog: www.howtolivewithsicklecell.co.uk. The e-copy of my book on sickle cell – How To Live With Sickle Cell is available for purchase on www.toladehinde.com and if you want to purchase a paperback version, it is available on Amazon.
Source: UN Human Rights
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