For anyone living and having to cope with any kind of chronic condition, having a solid support system is absolutely necessary. This is because, chronic illnesses generally tend to disrupt your life in so many ways. Commonly; pain, fatigue,disruption to physical abilities, independence, financial problems due to not being able to work and depression are some of the ways in which research has shown people with chronic condition experience disruptions. Just last week, I was down and forced out of work for most of the week because I was nauseous, dizzy and in unbearable pain. Boy, what an emotional dump! After my laparascopy procedure in August, I was able to enjoy about 2 months of being absolutely symptom free. I was on natural high! And now this.
I think it’s safe to say that the emotional rollercoaster that is endometriosis, clearly has other ideas for me.
Now I have always been the kind of person that will neither ask for, nor accept any help of any kind from anyone. (Disclaimer: To all the Psychologists, your psychoanalyst tendencies are not welcome here.) So typically when I get a flare up, I shut down. I don’t call or text anyone. I grin and bare it to those I am in contact with and everything looks great on the outside. Because I live alone, no one knows or sees just how much of a struggle it is to get up, get myself dressed or to even make myself some food to eat. And the emotional aspect of it. A constant turmoil of thoughts and emotions governed by the unpredictability of each day as it comes and the future ahead. One day I could be in a space of acceptance about the pain, the helplessness feeling, the fertility issues and so much more. And the next day could very well be wallowing in a great big pit of grief.
Recently however, I have discovered and I keep on discovering a greater sense of appreciation for the support offered by those around me. Friends, family, work colleagues and even strangers. The random call to find out how I am, the random drop by’s to bring me something to eat, the random flowers and fruit gifts, the articles sent to me about endometriosis that let me know you are thinking about me. The hot water bottles, the foot rubs and those moments shared with the people I care about who so dearly care about me. The little and the big things are what really make my emotional rollercoaster with endometriosis that much bearable. I mean, could I really want for more with such an amazing support system? Not really. But they could probably do with receiving more from ME.
Hindsight is 20/20. And on reflection, I have been pretty selfish in how I have dealt with my endometriosis diagnosis For those that love and care about me, and have been there for me despite how unforthcoming I have been. I realise that it probably has been stressful for them too as much as it has been for me. I have not tried to see things from everyone else’s perspective. I have not kept lines of communication open to clearly communicate to them how they can best support me in managing my condition. Three years on from my official diagnosis and five years with the condition, sadly some of those close to me still have no real understanding of what it is exactly I am really going through. Especially emotionally.
I recently became part of a ‘Zim Endo Warriors- WhatsApp Group’ and this is where the tables turned for me. I was no longer just the endopatient, I was also a friend to an endo patient. Now in the group, there has never been a time where every single one of us is feeling great and able to cope physically, mentally and emotionally. One of us is almost certainly down with unbearable pain, erratic bowel movements, nausea, vomitting, exhaustion and/or experiencing emotional bipolarism (laughing the next and crying the next). And even though we clearly understand each other’s struggles and we know that the other is going through something. I cannot help the deflated feeling of helplessness that unsettles me when I don’t hear from them for a couple of days. When there is nothing I can physically do. When all I can do is offer some emotional support and the lines communication are unavailable. When they are not forthcoming.
And so, I would like to apologise to those near and dear to me, Family, Friends & O Ye strangers full of good will. I promise that I will very thoughtfully consider how I need support in managing my condition, physically, mentally and emotionally. And when I do I will very clearly communicate this to you and maintain open channels of communication with you. I will do better to minimise both mine and your struggle on this journey.
What to do if you have been diagnosed and suffer from a chronic illnes?
- Whilst it may be tempting to pretend you never received your diagnosis and passively cope with it, DON’T DO IT! You won’t be able to optimise on your health and wellness being this way. It is stressful for you and everyone else around you.
- Actively face your condition. American Psychological Association (APA, 2015) suggest that actively facing your illness, can help you feel empowered about your condition and in a position to optimize your health. E.g. Write down your questions. Do some research. Speak to your physician about your concerns.
- Chronic diseases often fill you with a sense of helplessness and a lack of control on so many elements in your life. It is therefore good practice to try and manage the elements in your life that you do have control over e.g. Diet, the medications you take and the people you spend most of your time with (No Debbie Downers Allowed).
- Find, Build and Establish a strong network of support that you can rely on about the management of your condition.
- Seek help. We live in an era where ‘similarly bonded in experience’ individuals are separated by many miles and oceans apart and closer than those living with you, all thanks to technology. Find an online support group. Talk to a professional even.
- My favourite one, doing the small things that make my day like ;praying, reading a book, writing in my journal, listening to my favourite song, taking a walk or taking a candle lit hot bubble bath.
Another Disclaimer: I am not a medical health care professional. Therefore the content of this blog post is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physican or qualified health provider regarding your chronic illness diagnosis and how to best cope with it.