‘Just order the pizza, it’s worth the pain!’
I hear my friends and family say time and time again but for me I know, it’s really not. Around the time I was learning about how Coeliac disease affects my health I was also learning the impact it has, as do many other conditions, on my social life. With this in mind I felt it important to share, whether you have a disease, long term health condition or an allergy there are adjustments to make and these can leave you feeling acutely different to others.
Adjustment comes in many forms; physical, emotional, cognitive and practical but does it depend what stage of adjustment in these domains you’re at in order to feel normal? Or do we just reach general acceptance of having the illness and do our best to live life. For me I am always adjusting, it’s a fluid process, some days it’s easier than others, In order to give you an insight into how this is for me I should explain what Coeliac disease is.
Coeliac disease (celiac disease in USA) is an autoimmune condition where the body attacks cells in the small intestine affecting absorption of nutrients, there is little known as to why and who gets this but ultimately it is brought on by an intolerance to gluten. When gluten enters the body the immune system gets attacking it and with that, the lining of the small intestine. The symptoms are varied but for me involve; cramp and severe pain in the lower stomach area, nausea, often vomiting and at times vertigo. These symptoms can last up to 4/5 days and it’s a slow onset over those days.
Having been a dancer I was always a healthy and conscious eater so never ate that much gluten containing foods (pasta/bread/ wheat based products) however, at 22 I ate some pure wheat grain and became severely ill setting of a chain of investigations and intrusive tests to discover that the treatment is to avoid gluten (!). Medications can be offered to allow some eating of gluten but for me this wasn’t an option as I hadn’t been eating it that much anyway.
Adjusting to the practical side of the disease was ok, I had support from family which was key to helping me buy the right foods and emotionally voice my frustration and having to think carefully at each meal and ask numerous questions at restaurants(feeling sorry for waiters constantly!). Adjustment had to happen quickly in order for me to eat proper meals and not be sick. However, emotional and cognitive adjustment took longer, as with many other diseases and conditions.
Social events, parties, holidays… pretty much the fun parts of life were difficult as explaining, negotiating and preparation was important so that I didn’t go somewhere without any options and have to not eat. This part I found difficult as I didn’t want to explain to everyone why I couldn’t grab a flavoured crisp out of the sharing bag, why I couldn’t have a platter with everyone at the restaurant and why I may need to check menus and plan before I even attend. This is also the part at which I felt difference the most. The sharing in experiences is a hard one to adjust to and one that my patients with gastro-related conditions also find hard. Society often rolls their eyes at the ‘picky’ eaters, the ‘gluten free’ followers which makes these adjustments more difficult.
For me, support from friends and family, an open mind from the rest and years of experience have helped me to adjust emotionally and cognitively. Yes I get the odd ‘I wish’ but once the practical side is managed well it’s just a case of enjoying experiences for the people and the things you are able to do. In health conditions where physical mobility is restricted, or diet, or lifestyle it’s key to look at what you are capable of doing, however limited and to build on that. Of course having your time to vent, be angry and cry is also important but once that’s done, looking around at what you do have and are able to do is one of the best ways I’ve found to move forward for me and my patients.
Adjustment is ongoing; it makes us feel different to others, acutely at times. The way forward to acceptance is giving yourself time, allowing others to support you and opening up to the possibility that it’s not all awful, that it can be an opportunity to learn and to view things in a different light. For me, that was to see how adaptable we are and how well we as humans are able to cope.
For support or more information on this condition go to www.coeliac.org,uk NHS choices has a page on Coaliac also. Message me for any more information, questions or comments.