Living with an invisible illness: You look very OK to an observer but feel awful inside

Living with an invisible illness

You look very OK to an observer but feel awful inside

By Lady Anne Welsh, UK

Anne Welsh Source: anne

Having sickle cell has somewhat changed my life. It is hard to explain to someone with no idea of the daily struggles we face. It is an everyday encounter with the pain, the under-the-weather feeling and the contradiction of feeling awful on the inside whilst looking perfectly fine on the outside. More needs to be done to help folks with SCD cope with these daily struggles. The society at large needs to understand the struggles we face and learn to be less judgmental when someone with an invisible illness tells them that they are unwell.

The truth is that the majority of times we feel guilty for being in this position. We feel very alone with our proclivity of not being able to do all the things our friends and family are doing. We feel depressed and anxious as we are unsure of tomorrow. We are in pain during the sickle cell crises, making it difficult for us to get out of bed, make work plans or have a normal life.

I felt so overwhelmed when I first realized the gravity of the sickle cell challenge. A lack of understanding of the associated pain meant that I was daily in and out of the hospital. This was because I wanted to fit in and engage in activities similar to what my sisters were doing, which, in turn, caused me great harm.

The peculiarity of SCD made me quit a job the very first day, just hours after clocking in. My body was in shock. The manager could not comprehend why I needed my desk area to be at a set temperature. I also noticed that several people avoided me as I couldn’t keep up with their demands.

I believe that the more we talk about SCD issues, the less we feel isolated. We need to exploit all avenues to accentuate this information-sharing. Airing this dialogue helps people have a better understanding of what we are passing through. And so, I will never stop believing in the power of talking and sharing experiences on this rarely-talked about disease.

Invisible illnesses are real and society needs to understand that although we might be perfect outside, a closer look inside will tell a different story. Once we find ways to get our loved ones and care-givers to understand our daily turmoil, our struggles tend to be easier to endure, with a palpable improvement in treatment outcome and quality of life.

SCD has really changed me, and many people just don’t understand it and can’t handle seeing you that way. Thus, this warrants a need for love, hope and motivation.

Really, this is all we need. Love from people, hope for tomorrow and motivation to sail through each day.

Founder/President, Arise Consult, Lady Welsh was former Chairperson, Sickle Cell Society (UK)