Part 2
Author: Ann Grandchamp, Mental Health Editor
Are you ready to be moved to tears? To be encouraged and to feel less alone on your own journey? Are you ready to feel inspired?
Then jump into the stories of 10 amazing women facing or having faced chronic illness. Today I’m sharing the next 3 stories of 3 brave and authentic women. I encourage you to make yourself a cup of tea or coffee, sit down with a piece of paper and a pen and write down the things that inspire you or the tips that you want to put into practise yourself.
STORY 6 – Sefora Cuoco
Q. What illness are you suffering from?
I suffered from severe migraine starting at the tender age of 17. I used to have heavy attacks as often as 3-5 times a week.
Q. Would you say you’ve gone through a grief process because of it?
Absolutely. I thought my life had ended at that point. I was suffering extreme pain and no one could help me. I ran from doctor to doctor. Until realizing that I am the only one who can solve this problem.
Q. What helped you through this time?
I went on a deep spiritual journey to India, where I discovered many things about myself. Some parts I liked and other parts I didn’t like so much. It was very challenging for me. I had to change a lot of bad habits. I quit smoking, I began a strict vegetarian diet and I meditated regularly and I got out of a toxic relationship. This really made the difference.
I basically eliminated the stress factors in my life.
Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.
Keep your calm. Don’t do too much research on it and trust your intuition and your gut. It’s crucial to trust yourself FIRST, then the doctors. Also, do consider meditation and alternative therapies as an option, since it’s very easy to pop pills, but what are the long term effects on your health? Try eating less animal products and more plant-based home cooked meals.
STORY 7 – Louise Gooding
Q. What illness are you suffering from?
I had lived with undiagnosed ADHD for many years, something which only came to light about two years ago, when my daughter was seeking her own diagnosis and it was recommended I too speak with someone about my own potential diagnosis. Living with an undiagnosed neurological condition brought extra complications. For many years I had struggled with why I found seemingly simple things so hard, like organization, remembering things, having energy burn outs; all which led to a lot anxiety, depression and mood swings.
Q. Would you say you’ve gone through a grief process because of it?
Definitely. When you are struggling to keep up with the world around you, and especially in an age where everyone paints the picture perfect life online and on social media, your anxiety goes through the roof.
You have no understanding of why you are struggling in the way you do, so assume there is no real excuse or answer to your behaviour or to why you can’t seem to fit in.
I found that once we moved to Switzerland, I was becoming a lot more aware of my quirks. Living in a country that prides itself in rules, regulations, orderliness, time keeping and schedules, it was quite difficult for me. It wasn’t that I wasn’t trying to be those things, but the mental strain of trying to keep up, and a lot of the time failing, really took its toll for a long while. It wasn’t a new feeling, I had always had my ups and downs, but now it was becoming a lot more apparent that something was surely wrong.
There was a time I felt such a failure and was fed up trying to understand myself or to see what my purpose was, that I dropped into a very dark place.
Q. What helped you through this time?
I sought help in the form of counselling and changing my diet, we found an au pair who came and lived with us for a short while so I could concentrate on helping myself and finding my self worth. At this early stage I still hadn’t received my diagnosis, but the counsellor was giving me a lot of help to guide me through some of my anxieties and techniques to calm myself down in stressful moments. I had begun motherhood at a very early age, having had my first daughter at the age of 19. I had bumbled through life, getting married, raising her, and then subsequently my other two daughters, moving abroad and being a stay at home mum. I hadn’t studied, I hadn’t had a serious job or chosen career path and it was suggested that maybe I consider who I was and what I wanted to do with myself, alongside my family. I was young and maybe finding something that was for just for me, would help boost my self confidence.
I started up a children’s entertainment business. I had always loved being with kids, and had once, many many years before whilst in school, considered becoming a teacher. I realised I liked all the fun, the kids and the research but the amount of paperwork involved and I were never going to be the best mix.
The buzz of working with children every weekend proved great for helping me see I could do more with myself. I managed a small team, I organised events, parties and even took part in an international radio festival. It was an amazing two years, but the strain of managing that, my family, a husband who worked away all week and my own ups and down became too much. Something had to give and I stepped away from the business.
I still craved for something to do. I had the energy to spare and I had the need to do something that was just for me. I was always wanting to chase the next big thing. I ended up volunteering here and there, anywhere I could to basically boost my dopamine levels (not that I knew that at the time). I had to feel useful. So much so I would go into hyper drive to do it all, and collapse in an exhausted heap, usually surrounded by all the things I hadn’t done whilst I hyper focussed on the next exciting thing to draw my attention.
When I finally received my diagnosis of adult ADHD, it probably was the biggest relief in the world to me. I wasn’t just some nutter on constant ups and downs, there was an actual reason for my mega highs and mega lows, for why I did the things I did.
I could actually start to read and learn about what it meant to be an adult living with ADHD and what it meant to be an adult living with ADHD and unmedicated. My brain just potentially had a chemical imbalance or a difference in the way its neurotransmitters worked. While that sounds scary for some, it literally meant my brain functioned differently. There is a lot of misrepresentation for what an ADHD is, how someone with ADHD acts, behaves, its effects, and even the false accusations that we are lazy, or stupid or it’s A MADE UP THING.
But it’s not that simple, there is no one imprint of ADHD, it manifests itself differently in each person it affects, as usually it is co-morbid with another behavioural or neurological disorder too (something I’m still to investigate myself).
Being able to understand more about my diagnosis has made it a lot easier to manage. I can be aware of my triggers, take better note of my time keepings (alarms for everything!), I can take ownership of who I am, and now speak openly and honestly about my limitations. But, I can also utilise the skills it gives me too. ADHD folks can be incredibly creative, our brains run at 100mph, leaving us full of ideas. Hyper focus on projects which really excite us mean that we will probably work 150% harder on things, refusing to sleep until the work is done (whilst trying to make sure we don’t burn ourselves out). We are honest, thoughtful, helpful (again, having to learn to say NO at times is an extremely helpful tool for self management).
I’ve basically discovered who I am and am now using my experiences, my energy and my ideas in a way that has better purpose, all because understanding who you are and how you work, allows you to manage yourself better and more efficiently.
I now write children’s books. I focus on challenging neurological stereotypes and discussing differences. My hope is to discuss difficult subjects and allow families a way to explore different topics: health, mental health, neurological and physical disabilities and differences.
Managing my work schedule as a writer is a lot easier around my family. The work I am doing allows me to research, learn and tackle interesting subjects. It’s allowed me to connect with other writers, other creatives. I’ve finally found my purpose, something that is for me and something that is easily manageable alongside all the other tools and changes I have made for myself to have a positive relationship with my ADHD.
Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.
Take the time to understand what this means for you. How will it affect you mentally, physically and in your every day work. Look at how you plan to manage that and your own and other persons expectations. Do people understand what that illness means, will you need to explain it to others and are you comfortable in being able to do that? Do you want to maintain some privacy or do you want to be open?
Allowing yourself some degree of openness gives you a little more freedom to say stop, no or that you need space from certain situations. This doesn’t mean you need to wear a t-shirt declaring to the world that you are one way or another, or facing your own battles with things (although I did see a pretty epic ADHD t-shirt the other day. ADHD – Highway to … oh look a squirrel..), but allowing yourself to make peace with yourself, ultimately makes the challenges it brings easier to work with, one step at a time.
But having a support network of people you can reach out to will help you on your path to discover how you wish to move forward. Accepting you may have limitations but also opportunities available to you should you wish to pursue them.
It’s ok not to be ok. And it’s ok to say this out loud. The more we can be open about our personal stories, struggles, ups and downs, the easier it is for others too to feel safe to voice their experiences too.
STORY 7 – Jennifer Mackie
Q. What illness are you suffering from?
Ankylosing spondylitis or in french bechterew disease.
Q. Would you say you’ve gone through a grief process because of it? If so, please
describe it here.
Yes definitely but there was a delay in my diagnosis which meant my grieving process was over a couple of years. At first I really just wanted the pain to go away and for an official diagnosis so the pain would be under control. What I learnt is that the grieving process was necessary for me and also necessary for my children and husband as we all have to grieve for the person who I once was and for the activities I used to be able to do.
I got stuck in the grieving process with the thought that my family, especially my children will not remember how busy I used to be and what I used to be able to do and never to see me as employed. What also helped me with that was speaking to a lady who has Alzheimer’s who had the same question as me. I was able to see that for her the situation was much worse than mine.
One thing I loved was to play tennis which I have had to give up. I tried to continue to play and it was heartbreaking when I had to accept that I had to give it up. I allowed myself to cry and be angry and found people who I could talk to about, it including a psychiatrist. There were times I was really depressed and did have thoughts that life was not worth it anymore.
I reached out for help in these times and surrounded myself with friends who made me laugh. Laughter is even more important than it used to be. It took me many years to accept I was classified as disabled and to ask for help from outside my family. Once accepting this, I found that I was happier having solutions to my situation and to be more independent. This has brought me peace.
For me I delayed the acceptance of my disease by hoping for a miracle drug that would give me my life back and that I could go work. Now I see this was a waste of time and I wish I had accepted my reality earlier on and made plans according to it. I found fighting against the grieving process and the reality of my situation made it harder on me. Getting to the accepting stage has brought me peace and happiness.
Q. What helped you through this time?
My husband at the time, my children and my cat called Oscar. It really helped to see how others are worse off than me. Living in Switzerland and having access to good medical treatments is a huge advantage. My one injection cost over a thousand a month which the insurance pays for. In some countries like the USA there are people who can’t afford this medication which is horrible as without it my spine would fuse and I would be in constant pain.
Lowering my expectations of myself helped. If I manage to cook dinner I see that as a victory. Being aware of the grieving process helped. Support from facebook groups of my illness has been a huge help. Meeting with others who also suffer from a chronic illness. I made a list of what I had to give up and tried to find alternatives that would replace the activities I used to do. One thing I could not replace was playing tennis and working. For tennis I set a goal to one day to go watch Wimbledon and I also try to watch all the tennis matches, especially if Roger Federer is playing.
Due to my illness I joined the International Women’s Club of Nyon in order to be with people as I had to stop the activities I used to do. I started a chronic illness group there with a friend of mine. The club has been an amazing support for me and I have met wonderful friends who I would have not met if I had been healthy and able to continue playing tennis and to be able to work. Silver lining to a cloud for me, as I find myself surrounded by amazing friends which have been a lifeline to me when my ex husband left me.
Q. What would be your top tips for someone who has just found out about a chronic/life threatening illness or is struggling with this reality in their life.
Allow yourself to grieve. Realise that life will not be the same for you but it doesn’t mean you can’t enjoy it. Find inspiring/famous people who have what you have and read about them. Dan Reynolds from Imagine Dragons has the same disease as me and I follow him on facebook etc. Somehow this helped me.
Find support outside your family and friends as soon as you can. In person or online. There are many support groups on facebook for many illnesses. They help you feel not alone and understood and answer questions your doctor is not answering.
Where you have to give up activities you enjoyed, try to find alternatives. Try to focus on any positive this may bring. Adjust your life accordingly as soon as you can and find people who love you, illness and al,l and accept you for who you are.
Look for local groups for your disease. I go for physio through the Bechterew Suisse Society. It is good to be with others that have the same disease and the therapy is adapted for us and is really helpful.
Thank you!
A very very big thank you to all of the wonderful women who shared their story to encourage others. Please leave us a comment and don’t hesitate to reach out if you are in need of guidance or support.
Take care! Stay safe!
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