“But you don’t look sick!” – living with a hidden illness

Julia Girling tells us about her experience of the often overlooked issue of having a hidden illnesses. She came to Breakspear Medical for compassionate and knowledgeable treatment, received a new diagnosis and got her life back.

Excerpt from Breakspear Medical Bulletin Issue 53:

Years of being silent with ill health

Friends, family and people I don’t even know have said “But you don’t look sick”, even when I was at my lowest and feeling truly very ill.

Over the years, I’ve become a master of disguise to hide my ill health. However, those who know me well know when I am not feeling good.

To those struggling with hidden illnesses, I understand how challenging it can be to live life when you are both mentally and physically exhausted. Unfortunately some people don’t always have an understanding of the gravity of your situation and it feels like they’re questioning “Are you really sick?”

At my lowest point, just over a year ago, my life had disintegrated. Even getting between the sofa and my bed was a struggle; it took a lot of energy, which I simply didn’t have.

As I live in Spain, family and friends often come and stay. At my low times, going out socialising in the evening just didn’t happen because I lacked the strength and will.

The impact on my life at the time felt immense. It affected all my relationships, particularly my partner, who had to do most things on his own. He did a sterling job looking after me, but we were both at a loss of what to do. No matter what we tried, it did not work.

In the end, a Spanish doctor helped by prescribing depression and anxiety medication. Being immune suppressed during Covid was a very worrying time for me and I am sure it played a part in my becoming very anxious. At that time, I couldn’t travel to Breakspear Medical because of the Covid travel restrictions and my symptoms became worse after my Covid vaccination.

If I ate, I would then get a stomach ache, diarrhoea or constipation. I would feel weak and shake most days. I really didn’t know what to eat and my stomach was so swollen that I looked like I was pregnant.

I had skin irritation all over my hands and my mouth was constantly sore with a split tongue. I always felt tired, but not like a normal lack-of-sleep tired; it felt more like I had the flu, with aches, pains and a foggy head. I couldn’t think of words when speaking, I couldn’t coordinate my body and I felt so weak. The word ‘exhaustion’ didn’t even resemble how awful I felt. I now call it an ‘allergy hangover’.

Nearly 40 years ago, when I was in my early 20s, I was diagnosed with Crohn’s disease, which is a lifelong condition that causes chronic inflammation of the digestive tract. I was later diagnosed with colitis, too, which is when the colon is inflamed or irritated. My life has been truly difficult at times. I’ve been in hospital on steroid drips, steroid enemas and lots of pain killers.

Traditional medicines work for most people, however, I am intolerant to many antibiotics and I can’t take anti-inflammatory medicine, which doesn’t leave me with many options.

My first appointment

The first time I visited the Breakspear Medical clinic, I had a consultation with Jean Monro, who is an environmental naturopath. I remember leaving the clinic feeling very relieved because she understood my symptoms and thought she may be able to help me.

In all my years of visiting various doctors and gastroenterologists, none of them seemed to understand how I really felt. Before I visited Breakspear Medical, there were no opportunities for testing and treating sensitivities and intolerances to food, medications and other allergens despite having asked many times for these services.

During my next visit to the clinic, I had a range of tests and the results showed that I had Mast Cell Activation Syndrome (MCAS).  This is an inherited gene-related condition which means that my body doesn’t produce diamine oxidase. Diamine oxidase is an enzyme that helps to moderate the body’s histamine levels. Histamine is a chemical that your immune system produces which causes symptoms of allergies/sensitivities. As my body wasn’t producing diamine oxidase, I was in a constant state of immune system reaction.

Other pathology tests revealed that I am gluten intolerant and my body was lacking in many essential nutrients. I was anaemic and my B12 levels were low and both continue to be low.

I’ve also had tests for the methylation pathway, urine organic acids, moulds, viruses, food and other intolerances, bacterial infections, stool analysis and parasitology, and quite a few others recommended by Dr Daud Mohamed and Jean.

Thanks to Breakspear Medical’s extensive network of specialist testing laboratories, they have managed to get to the bottom of the problem (pardon the pun). My stool test revealed an imbalance of bacteria in my gut, as well as candida, which is a yeast, and found a parasite present. The parasite has been treated and is now gone. I am on a yeast- and sugar-free diet to help remove the candida and I have support with various healthy bacteria supplements.

My treatment programme

Over the years of having Crohn’s and colitis, I’ve struggled with food, as I tried very hard to eat a balanced diet. However, I think having a dodgy digestive disease has meant that not very many of the good nutrients were absorbed.

Registered nutritional therapist, Gabrielle Hyland, has been invaluable in helping me improve my diet. She is the best nutritionist that I have ever seen. I now have a wide range of nutrients, in the form of supplements, to help with my MCAS, genetic diamine oxidase deficiency, high anxiety, methylation issues and poor digestion.

Along with being yeast– and sugar-free, my diet is now also gluten-free and consists of low histamine foods. Recently I have been following a low carbohydrate, keto-based diet because I have high fasting insulin. Keto diets are known to improve insulin resistance.

Lucky for me, my partner is a chef and I give a lot of credit to his patience and understanding of my special dietary needs. He has lovingly spent time sorting out a vegetable-based passata. Passata is usually simply sieved tomatoes and has a smooth, sauce-like consistency. However, tomatoes are high in histamine so I shouldn’t eat them and with his vegetable-based passata, I have a selection of ready meals made from it, such as vegetable curry, Moroccan chicken, shepherd’s pie and soups to name a few. All very delicious! And tomato-free.

Living in Spain is fabulous as the fruit and vegetables are fresh and grown locally. Living near the sea, the fish is generally from catch to fork the same day. Fish is my occasional treat, as it is also high in histamine.

Fortunately many restaurants kindly work around my restrictions. I choose meals such as chicken, pork or fish cooked on the grill, with vegetables and big salads.

I take Nalcrom and my other recommended digestive support supplements before and with food to help stop or reduce reactions.

While I am at the clinic, I have infusions of iron and B12. I call this my ‘rocket fuel’ and feel so much better the day after and for a while. Thankfully the nurses are very skilled at managing any concerns that I have.

What really made a difference

I think the most important element of my treatment programme is the low-dose immunotherapy (LDI) food intolerance testing and having the LDI vaccines. This has really helped me to tolerate more foods, which is great as I do like to eat!

I have plans to ride my new bike and take longer walks to improve my fitness.

Recovery has been a slow process and some days I still struggle and have a lack of energy, but I am getting there.

I realise there isn’t a cure for MCAS and some other gene impediments I have and that I will always need help from the clinic through LDI vaccines and infusions. The big win is my symptoms of Crohn’s and colitis have literally gone and I can eat without pain and all the other nasty consequences I had before.

If you are struggling, the important point is there is always hope and a compassionate, professional team at Breakspear Medical who will do their very best to help you.

I am forever grateful to Jean, Dr Mohamed, Gabrielle, the nurses, and all the clinic and laboratory staff. I feel they have given me my life back.