Struggling through an illness that has no guaranteed cure can be daunting for many, especially for those coping with Multiple Systemic Infectious Disease Syndrome (MSIDS).
MSIDS can create an illness that may be unique to an individual as symptoms are wide ranging, making diagnosis difficult and successful treatment even more difficult to find.
Claire Waite is one such unlucky person, being diagnosed with MSIDS five years ago and losing her teaching job because of its symptoms. Instead of just waiting for a cure which may or may not show, however, she has instead written a book documenting her experiences and guiding others struggling through the same situation as her.
Waite (35) is originally from Galway and is now living in Meath with her husband.
She has been unable to work since 30 due to her medical issues and officially lost her teaching job at 34 after failing to find any successful treatments.
She first noticed changes in her health at 19 and by 22 she was beginning to feel physically unwell, but was not diagnosed with Multiple Systemic Infectious Disease Syndrome (MSIDS) until she was 30.
“My hair thinned, I ached all over, I was utterly exhausted and my belly was permanently bloated and painful.”
She has to take 11 hours of sleep and, if she is unable to, “every system is ten times worse.” She will have constant fatigue muscle problems with blurred vision, an issue she expects will become much worse after her baby is born.
Pacing social reactions is something now part of her schedule as she can only last a short amount of time without feeling exhausted and faint, even if she is just having a cup of coffee with a friend.
“I know myself, maybe it is best to have two social things in a week, maybe one.. You kinda just know to pace as they say and whenever I meet someone I see myself getting sicker maybe an hour into the meetup and you’d go like ‘Oh god I better get home now.”
This not only changes how she socialises, but who she is with as well with some not willing to keep in touch with some unable to consistently keep in touch. This can also be seen in a positive light, however, as it means those who truly care for her stay and new friends willing to keep in touch have come along the way.
“I would have lost friends along the way obviously because it is hard to be friends with someone who doesn’t show up or can’t do stuff, and then you make new friends as the years go on that are a bit more understanding or get it a bit better.”
There are treatments available internationally for MSIDS, but sadly they are both extremely expensive, especially those in the USA, and are not a guaranteed success. Its symptoms can be completely different from person to person, and this is the same in terms of treatments.
“People like me are mostly waiting to see how research in America goes around long Covid and maybe something is discovered to treat that. Our symptoms are so similar.”
While struggling with her illness, Waite wrote her book ‘But you Look Fine!?’ which documents her experiences with MSIDS and the lessons learned from them. She does not have any medical experience so instead writes from experience on how to cope and what to do when in a similar situation as her.
“I wrote the book because I could not find a book like it. You can find books that maybe give you kind of advice in terms of american books, but then you can’t get answers in terms of social welfare, all the Irish stuff and how to deal with it in Ireland.”
Her book can be bought on her website https://www.butyoulookfine.ie/ including information for those suffering from MSIDS and similar illnesses.