10 Tips for Starting over with Chronic Illness after 40
It’s not over. You - are not over. It wasn’t the “Happily ever after you wanted.” You are not a failure. You fought so hard for so many years, and you didn’t even realize how sick you were. It was all so… normal?
I wish someone told me that while I was going through diagnosis. While everything was new and scary and completely unknown. There are a lot of bloggers and vloggers on the internet that are in the early 20’s that talk about POTS, EDS and MCAS. They share their stories with viewers in a similar demographic, who have struggled hard through high school and they get to college and their bodies just cant go any further. What about those of us who have lived a whole life already and are getting to or are over 40? It is a whole different set of circumstances. We’ve had careers, some of us have had children, long term relationships, mortgages, debts and have been sick this whole time. Just thinking we are inadequate failures at being adults. And now we cannot go one step further. Literally. We are falling apart.
My illness stole little pieces of me, one at time, so I didn’t notice at first. Slowly my stamina drained away. It became harder and harder to keep up, even trips to the grocery store felt hard. I avoided doing certain things which made me seem lazy and anti-social. The pain overlaid on top so many other symptoms. Body system by body system, a cascading failure approached. It wasn’t until an experience with pneumonia triggered a significant POTS episode, Mast cell flare, and rapid decline due to Ehlers Danlos (misdiagnosed as Ataxia at the time) that I realized life was never going to be what I had dreamed it would. This was the singular most grievous blow that chronic illness dealt; the death of the life I imagined. I started losing everything. My business. My farm. My direction. When my partner gave up on me, I gave up on me. When my son gave up on me, I gave up on life. And for a couple of years I just gave up
When I look back I can see the signs of Ehlers Danlos Syndrome and comorbidities were glaringly obvious growing up, and through my adulthood. However, it still took until I was 40 to get my diagnosis! I never knew what these cluster of disorder were; Ehlers Danlos, Mast Cell, Dysautonomia/Postural Orthostatic Tachycardia until I was diagnosed. Every time I got a new diagnosis I would think “Ah, this is why it has been so hard and I have been so sick. I have the right medicine, now I will be better.” I was terribly misguided. It takes a lot to be diagnosed – fully, whether you are 19 or 44, and treatment is a whole other problem. But to get my life back – to be something other than my illness, I needed a diagnosis. With a diagnosis I could work on finding stability through trialing different medications, interventions, treatments, braces and protocols. With stability I could start to put my life back together again and redesign what I wanted it to look like.
What is my new “Happily Every After?” What is going to give me the same joy, meaning and fulfilment that running the Farm and Forest School did? I miss my animals and life on the farm, homesteading and the creativity of making things from scratch. How can I access this again? One gift I have always had is making just about anything accessible – anything!!! I spent the last 20 years creating programs and consulting with schools, recreation facilities, and businesses on making their offerings accessible. Its time to take my own advice – I don’t know about you, but that is apparently the hardest thing in the world to do!!! WHY? Why is it we can help others with our gifts, but it is so hard to help ourselves?
Here is my advice to myself, and I hope it helps you too…
1. Remember to break everything down into very small manageable pieces 2. Our dreams and goals are not in a race against anyone, ourselves or the clock 3. GO SLOWLY (this is the hardest thing for me) 4. Schedule breaks, and take them even when you feel like you don’t need them, you really do 5. You don’t actually need to do everything today, please put some stuff off until tomorrow and the next day 6. ONE THING A DAY – do just one thing a day, good day/bad day, just one thing a day towards your goal. It can be a big thing on a good day, and a little thing on a hard day, but do one thing 7. Practice Self-Compassion. Go easy on yourself, its been hard. We so often beat ourselves up for things we cannot control due to our illness. 8. You have limited energy, spend your energy with intention. Make lists, prioritize, delegate, and SAY NO when you need to (this is an act of Self-Compassion too) 9. Regularly schedule a pity party. For real. There will be failures through the week. Things will not go as planned. There will be disappointments, and you may be angry that you cannot perform the way you want to. Write it down in a journal, on your phone notes, or in a personal Snapchat to yourself, then once a week go through your frustrations with a friend, acknowledge your limitations and forgive yourself, eat comfort foods, watch a movie – do what comforts you. Make a ritual out of it, and let it go. 10. CELEBRATE your accomplishments. This is very important. Every week reflect on your accomplishments no matter how small. It may help to have a friend help you with this. Share your accomplishments with some supportive friends to keep you motivated and to keep moving towards your goal. 11. BONUS: Avoid watching too many able-body webinars on business, goals, self-improvement, and motivational speakers… they are playing from a completely different manual than we are.
Life will never be the same. It won’t be the way we imagined it – so we have to reimagine it. It will be slow, and fast - time is somewhat skewed with Chronic Illness and there seems to be a whole different relationship to it than as an able-bodied person. Build a team of friends, colleagues and community around you to support you as you start over with chronic illness. It is possible to live a reimagined life.
I’d love to hear your stories of how you have had to pivot with your disability/chronic illness. Please share here, on IG, FB, or our FB Group “Homesteading with a Disability.”