Published: 08/02/2023 Tags: Stories

It helps to have supportive family members who believe you

It’s hard to put my story into words, having suffered until I was 38 with an invisible illness, and facing judgment from people close to me. At the same time having no explanation, I also questioned myself and thought perhaps these people close to me were right. There was nothing wrong with me and it’s how everybody feels in their bodies (tired, dizzy, grumpy, chronic GI pain and discomfort).

I was a gymnast as a child and then became a qualified yoga teacher in my 20s. Being praised for my flexibility, rather than realizing the flexibility was the reason behind my chronic GI issues which had me on daily medication to live comfortably. From as far back as I remember I had bathroom issues (age 6). As I got older these got worse. To the point in my 30’s I was vomiting frequently 6 hours after eating, and on daily medicine to get any movement from my large intestine.

I was hospitalized frequently in the UK, but still never getting to the right specialists or getting any answers for my suffering, I was forced to self-manage my medication. The turning point came when I moved back to Qatar in 2019, the country I had grown up in. In 2021 I became so chronically ill, vomiting every second day, that I was forced back into the care of a gastroenterologist who had treated me back in 2011. The medical system in Qatar is amazing, every patient is given time, concern, and the very best care. Whether in government facilities or private facilities, they care.

Through this former doctor, I was referred back to the government hospitals where every area of my physical health has been addressed. I have spent the last 2 years living in shock, that I was being helped. Since June 2021 I have undergone an ileostomy, then colectomy surgery to remove my colon that was hypotonic dilated and stretched to a point where it could not move anything through. I was then treated by musculoskeletal doctors and genetic doctors and officially diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) / hypermobility spectrum disorder.

This was based on my family history and having relatives with the same condition, hypermobile EDS. At the age of 40, I am now receiving continued care and management from the fantastic medics at Hamad Medical Corporation, and since my colon surgery, I can eat again and haven’t vomited for over a year. Eating carbohydrates again is a dream. I am still undergoing a lot of tests as my GI system isn’t strong like other people’s, but I can eat. That’s enough!

Through all of this, I also had to pay bills and survive, so I returned to my franchise business which I purchased in 2018 – SmartPA. I had downsized the business when I moved back to Qatar, but with the limitations of weak health, bathroom issues, POTS, and fatigue, I needed the virtual working flexibility of a virtual PA’s life. I have returned to the franchise full-time. In the last 2 years, I have built up a very successful virtual PA client base with the help of SmartPA corporate.

There are days when I work from bed, but I am able to bring in a good income. It just goes to show that there are opportunities out there for continued careers when we are ill, we just had to work smartly and respect our energy parameters. Virtually working gives freedom. Freedom to work in your pajamas on bad days, and not be forced to lose energy in the community, yet still earning and being independent.

It also helps to have supportive family members who believe you, believe your symptoms, and support you. For me, that was my husband who came into my life at the point when I got very sick and has helped me through the very bad times. We recently married 6 months ago. I continue to feel very tired, but my quality of life is back now that I can eat. The day my colon was removed was the day this heavy physical discomfort was removed from my life. I feel like I’ve been reborn. I wish I could put into words the difference in my life now that I have medical recognition, validation, and the right treatment. There have been times in my history when I felt so alone, and was suffering so badly, that I wanted to die. I had no quality of life.

My faith and Christianity carried me through, but to want to die is truly shocking. I know I’m not the only Ehlers-Danlos sufferer who has felt like that. I hope my story helps other sufferers, I would love to hear from anyone else in the EDS community who has felt the same despair and need support.

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