I’m sure that my story is common to all who have an autoimmune disease. I have always been one to fall sick easily all through childhood, but the brunt of it began when I was 15. The joint pain kicked in and the never-ending stomach pain that at the time, I thought was simple hyperacidity. Needless to say, this continued, well, till now!
After many years of treatment for hyper-acidity and arthralgia, I reached a point where I could barely eat, and this left me (in hind sight) malnourished and underweight. My BMI was always between 16-17. I remember more than once while in campus, trying to donate blood repeatedly during blood drives and the medical officers would regularly chase me away because in their opinion, I looked like I needed the blood more!
Years later, when I turned 25 and pregnant with my first daughter is when the disease completely overrode my body. I would throw up till blood came out, I couldn’t eat or drink anything! Not even water! And this left me terribly dehydrated. I got so sick that I had stop my career because I was on complete bed rest for the nine months. Still, I did not get diagnosed.
As usual, my mum helped me with daily life. She kept me fed by preparing steamed vegetarian food. My system tolerated this better. After delivery, I felt a bit of relief, but the disease started again shortly after. It got increasingly worse, especially the stomach issues. I would throw everything up! Plus my whole body would ache and my vision started getting worse. I had worn spectacles since I was 8, but along the way I had stopped.
However, it reached a point that I could not do without glasses. Looking back, this was when the uveitis began. Yeah, I’m still on drops for uveitis and glaucoma till now ☹ Around then, I got pregnant with my second daughter, and all hell broke loose! Luckily, my gynaecologist was fantastic! And caring beyond the call of duty. I will forever be grateful! Anyway, back to the story, I was admitted in hospital literally every few days! So many symptoms! All of which included some kind of pain. But the worst pain was when part of my placenta was apparently being denied sufficient blood for circulation by a newly developed fibroid! That was agony!! The light in this tunnel was that my baby was healthy and growing well.
I however, felt like I was going to die the next minute. I would wake up some days and just cry when I realise I’m still pregnant. I know it sounds horrible, but I was in so much pain that I was constantly depressed. That left my husband, Eric, with the job of taking care of me, our daughter Karen, while still juggling long hours of work. He is another story! I would feel so sorry for him and guilty for condemning him to such an exhausting existence. He barely slept for months, and he had to constantly counsel me when I was in depression…which was every day!! Long story short, I delivered a premature baby due to my mental and physical health.
Thankfully, she managed to breathe by herself after four days in the incubator, a few resuscitations and surfactant injections. Those were long days. I remained sick after delivery and it only got worse from there. This eventually led me to two surgeries and at the door step of a rheumatologist that finally diagnosed me with Behcets after eliminating a long panel of autoimmune diseases, especially Inflammatory bowel diseases, which presents quite similarly to the symptoms I had. Turns out I do have colitis, but because of the Behcets Disease. Its hard to write everything down on one page because as you all who have been on this road know, it is a lot!
How am I now? Well, I have formed a routine that makes daily life easier. One must do this! First, I had to admit to myself that I cannot not do many of the things I used to do before with ease. Then I did mountains of research and came up with a routine. But the pain is always there. On good days it’s around a 4 on the pain scale. https://www.healthline.com/health/pain-scale (Source: Healthline). It never goes lower than that even on pain killers ☹ maybe a 2 when I get pain injections.
On bad days I cannot even talk or cry. It’s excruciating. Having an invisible disease is a terrible challenge. It cannot be seen or tested, yet it takes over every aspect of your life. And all you can hope for is that the next day will be slightly less painful than the last. That you will wake up without new complications. That you will not lose your eyes. Etc. hope is all one can cling to. But sometimes, even hope is far out of reach.
Why this Blog?
I started this blog in search of a support system for myself, and others like me. We are unfortunate to live with a rare disease, and so, finding a support system is hard. Sometimes all you want is to talk to or read from someone who has walked in or is walking in your shoes. I hope to provide such a space. And I hope you join me so that we can walk this road together.
My vision is to raise awareness about Behcets Disease and promote earlier diagnosis. Also, hopefully, to appeal for further research into treatment.
About Me 😊
My name is Jaime, and I’m 33 years old (2018). I got diagnosed in 2017. It has been one year since diagnosis and 18 years since the first symptoms began. I am a public health practitioner, a wife, and a mother of two beautiful girls, 7 and 5 years old.
What is Behcets Disease?
According to Mayo clinic, “Behcet’s (beh-CHETS) disease, also called Behcet’s syndrome, is a rare disorder that causes blood vessel inflammation throughout your body. The disease can lead to numerous signs and symptoms that may seem unrelated at first.” https://www.mayoclinic.org/diseases-conditions/behcets-disease/symptoms-causes/syc-20351326 (Mayo Clinic, July 29, 2017). It is an autoimmune condition, which means in simple terms that your immune system recognises your body as something to fight. In Behcets, the inflammation occurs in your blood vessels. Thus the havoc, because blood vessels are everywhere! Also, there is no way to test for this, unless the inflammation becomes so severe that it leads to other manifestations of inflammation, for example, such as formation of lymph fluid, which can be imaged.