How Mental Health is Affected by Illness | Morgan’s Story
A Series of Interviews With Chronic Illness Patients, Uncensored and Raw Truths About Life With Chronic Illness.
If you have a chronic illness, you know that each story is unique, including yours. I’m always telling my clients ‘No one knows you better than YOU’. Of course, in this experience, there are some very difficult experiences shared by many of us: at some point a doctor has probably told you ‘It’s all in your head’, You’ve likely been dismissed, your symptoms minimized and may have been made to feel as if your body is lying to you. It’s important to hear from others who might be going through something similar, to see how we are all different and most of all – to know we’re not alone in this struggle looking for validation, treatment and support in getting our lives back.
Keep reading to learn how our next guest Morgan wants us to know about seeking out help for chronic illness…
How Mental Health is Affected by Illness | Morgan’s Story
Q: What brings you to the realm of chronic illness? How did it all start for you?
A: “My chronic illness journey began quite late in life. I was intolerant to foods from a young age and extremely tired. And as an adult, it really began when I went to an Immunology clinic and tested for food and chemical allergies. The results showed, I was extremely intolerant to gluten and lactose, allergic to tree nuts and peanuts, tomatoes, garlic, nickel and seafood.
I was diagnosed with Oral Food Allergy Syndrome and Irritable Bowel Syndrome, Depression and Anxiety. A couple years later, I had widespread pain and no doctor would take me seriously. So, I paid privately to see a Rheumatologist, where I was diagnosed with Ehlers Danlos Syndrome at 23 years old. I also was suffering from Pelvic pain and paid privately to see a Gynaecologist, who diagnosed me with Pelvic Pain Syndrome.
I got referred to the NHS and these diagnoses helped doctors to do more investigations. I was sent tests for POTS, Bile Malabsorption, and had an Endoscopy. I was then diagnosed with Mast Cell Activation Disorder after bladder biopsies and my Tryptase levels were investigated. Other conditions, I was diagnosed with were: Gastrointestinal Reflux Disease, Interstitial Cystitis, Chronic Bilateral Ankle Instability, Postural Hypotension, Photosensitivity and Borderline Personality Disorder. I also suspect I have Endometritis and further gastrointestinal investigations are also ongoing due my long-standing issues with food and drink.“
Q: What’s the most challenging aspect of life with a chronic illness?
A: “Planning: I don’t know from one day to the next if I will have energy to complete chores / tasks. I also find it very challenging to fit my life around many hospital appointments.
Chronic Pain: Due to the wide spread chronic pain, I do not sleep properly which gives me chronic fatigue.
Mental Health: My mental health has been affected from my physical illnesses. It can be lonely sometimes not having people that understand what you are dealing with.“
Q: What has been something rewarding or positive that has come from your chronic illness experience?
A: “I have got back into my passion of arts and crafts and now donate 50% of profit to Ehlers Danlos Support U.K. I sell my drawings and do private commissions through my account ChronicCreationsGB on Etsy. Other interests I have gained are: writing on my blog and poetry about chronic illnesses.”
Q: What are some things you wish people understood better about your illness?
A: “I wish the links between my mental health and physical conditions was better understood. As I have many illnesses, I will focus on Ehlers Danlos Syndrome to answer this question. Many people assume that EDS is just simply being hypermobile, and list of the benefits of this to me. However, what these people do not realise is how EDS affects my whole body and quality of life. I wish before these people try to give me medical advice, that they at least read up on my illness first.”
Q: What are some of the best techniques or strategies you’ve used to manage symptoms?
A: “The best techniques I find to manage my Ehlers Danlos Syndrome and Chronic Bilateral Ankle Instability through heat, mobility braces and rest days. I manage my Irritable Bowel Syndrome, Mast Cell Activation Disorder, Oral Food Allergy Syndrome and Gastrointestinal Reflux disease by taking H-blockers, mast cell stabilisers and being on an elimination / low histamine diet.
I find my mental health and Interstitial Cystitis harder to manage. I was on medication for my mental health, but it made me put on weight rapidly. Now I distract myself through blogging, drawing, seeing friends and crime television programmes. If my bladder pain flares up too much I will try my hardest to sleep through the pain and avoid acidic foods and drinks.”
Q: Have you ever seen a therapist to help with your illness experience? If so, how has therapy helped you?
A: “I have seen many physiotherapists for my Ehlers Danlos Syndrome and Chronic Bilateral Ankle Instability. The therapists have helped to try and strengthen my muscle and ligaments, but with little success as my proximal limb muscle is deteriorating. However, I am due to do the Royal National Orthopaedic Hospital 3-week inpatient physiotherapy programme this Summer. Other therapists, I have seen have been for my mental health. I did not find Cognitive Behaviour Therapy (CBT) useful when I was a child as I find it difficult to trust people. Although, this does not mean it cannot work for others.”
Q: What advice would you give someone who recognizes something might be wrong but still hasn’t received a diagnoses or has just received a new diagnosis of chronic illness?
A: “If you recognise something is wrong, try to keep a diary of your triggers to see a pattern or a trend and try to see if this fits into anyone in your family’s medical history. This will help the specialist understand more of what may be going on or what tests would be most relevant to your symptoms.
Secondly, Facebook groups are great way to get names of Doctors to see privately or enquire about on the NHS. However, I would take medical advice from patients with a pinch of salt. As even people with the same diagnosis, symptoms and pain will vary. You can also find a lot of information on not-for-profit organisation charity pages about your condition(s) online.
I just think, no matter how long it takes, don’t give up! If you do finally receive a diagnosis, it can be scary but understanding your condition, is the best way to managing it. Once, you have come to terms with your diagnosis, it can be beneficial to see if any related illnesses could have to help you feel better.”
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Learn more about Morgan:
Hi, I am Morgan Isabella Shaw. 26 years old and an NHS professional patient. On Brains & Bodies Blog you can find mine and other patients’ chronic and mental illness experiences, original poetry and ways to improve your life with a chronic illness. Topics include but not limited to: Ehlers Danlos Syndrome, Borderline Personality Disorder, Depression and Interstitial Cystitis.
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