Running a Business with Invisible Illnesses
I have no future, I am useless, I am worthless.
A few of the words I used to describe myself and my contribution to society. I had been bedridden and diagnosed with a medically unexplained brain condition and a few chronic illnesses. The depression and anxiety were the only visitors I had, and they were unwelcome.
What to do? Well in 2020 I spent a long time having a pity party, I called the crisis helpline and I just wanted the pain and the thought of being a burden to end. When I accepted my life would be different I began advocating and participating in discussions around invisible illnesses.
Photo by Anthony Tran on Unsplash
I thought about all the missing pieces and some of the blocks in getting a diagnosis, working towards raising awareness and looking for what else could be done. I came up with the prospect of what I was going to do and pitched it to a friend.
I then wrote down post it notes and A3 sheets of what my vision looked like. I had already run a business for 5 years at this point. I knew I wanted to continue to work for myself due to the flexibility, the fact that I may not be able to find a company that understood chronic conditions and all the stress that would come with it. I was just about overcoming the people who had given me every suggestion under the sun. Could I possibly put myself through that again? I wanted to raise as much awareness as I could, but that was met with bumps across the road. As someone who was still learning how to pace and battle the old Shehla’s way of working I struggled.
Pacing
I had to work out my baseline, this part was challenging. How do I workout my energy levels when I couldn’t remember who I was and where I was going some days. My symptoms would vary from hour to hour, there would be a seasonal change and then boom a relapse and I was bed-bound again.
I would fight the urge to overwork when I was having a green day, which basically meant the day I was not dropping on the floor or going into some sort of seizure, involuntary movements and brain fog. It took me months to come with a name, it took me longer to build the website and put the components together. It historically took me three weeks sometimes to do this whether for my own projects or clients. But this was new territory for me. I had to monitor and assess what my triggers were and almost force myself to rest. I even had to research how to do that, because a face mask alone is not enough.
Rebuilding
When I began rebuilding there were plenty of barriers to battle, which felt like an extra load I had to deal with. I then prepared myself for launch day, I shared a post after nearly a year of hiatus, and there it was. My truth, for people to know, understand, judge and support. I didn’t want to feel like I was asking for sympathy but sharing how much my life had changed enabled me to reduce my own judgment towards myself. They say you should be your authentic self, and although I try, there are days when I know society will share more harm than good. The unsolicited advice of “just get on with it”, "just be happy”, “smile more and it will go away” when bed-ridden doesn’t help, trust me. The more I continue to survive the more gaps and work I see needs doing. That’s why most of the people who have worked with me on projects and content for ‘About M.E.’ have chronic conditions or invisible illnesses and I hope to continue building a place where people can work but not have their identity stripped from them nor put them on a performance plan. I've learned from others who have featured on my podcast 'A Spoonful of Recovery'.
Thank you to help making it to 40 episodes of A Spoonful of Recovery
And even when my body begins to shut down again, the pain continues to pierce me and my world feels like it's collapsing again I still have my purpose which has kept me going through some tough times.
So here’s to rebuilding, even when it feels impossible, painful and demoralising I hope there is a successful and peaceful journey to share in all of this.
Written by: Shehla Ali