I was diagnosed at the age of 38 by a private endocrinologist who tested my immunoglobulin levels
Prior to that I had seen many doctors, none of whom ever mentioned PID or did the relevant tests. I was repeatedly told that there was nothing wrong with me, despite experiencing recurrent upper respiratory tract infections and being bedridden a lot of the time.
Frequent colds and fevers have haunted me all my life
As a child, I was frequently absent from school, owing to ear, nose and throat infections. In my twenties, I muddled through university as best I could and, in my thirties, I found myself bedridden a lot of the time. Psychologically it has been difficult because of the lack of understanding from family and friends who thought I was being sensitive or lazy, given the amount of time I was spending in bed. I was confused about what was happening to me and started to think that I was imagining it all or that I was weaker than other people.
I was elated when I was finally diagnosed
It was fantastic to finally understand what was wrong with me and that I was not just imagining things or being weak.
My family is affected in the sense that I cannot help my elderly mother as much as I would like to because I am not physically strong enough. I do my best, but it is not always easy.
I believe in staying positive no matter what life brings you
The PID I have is considered mild, but it has nevertheless affected my life on all levels. I have not been able to pursue a career in the way that I would have liked to and, because of my sensitivity towards bacteria and viruses, coupled with the hereditary factor, I have chosen not to have children. I am not sad about it. It is just how it is.
In life we have to make the most of the hand we are dealt with
For years I did not think that I could be in a relationship because, ‘who would want to be with someone who is ill all the time?’ But therapy taught me that I was wrong and I am now in a wonderful and supportive relationship.
There is apparently no cure or medication I can take for my PID, so it’s a case of staying away from germs. I run my own business from home so that I don’t have to meet others or take public transport
My life is a little restricted, but I think I have made the best of the situation and I am grateful every day for being alive and relatively healthy. Getting the diagnosis at 38 helped me make the necessary adjustments to improve my quality of life. I now find that, because I am meeting fewer people, staying away from those who are unwell and washing my hands frequently, I have about two or three colds each year, which is fantastic given how things used to be. I also lead a healthy lifestyle, because I am determined to support my immune system as best I can. So, in a weird way, PID has forced me to make positive choices.
Because of PID, I was terrified when early reports came in about Covid-19 circulating in the UK. I took precautions immediately
It is ironic, therefore, that I contracted Covid-19 early on. In mid-March I began to feel very tired for about two or three days. In the evening of day three, I started to experience chills and noticed that my temperature was rising. By midnight my temperature had risen to 103.1°F, so I took paracetamol to lower it. I also had a bad headache.
The fever lasted three days, by which time I had started coughing as well. It was not a dry cough, so I thought it was flu rather than coronavirus because, at the time, a dry cough was flagged as a symptom. By day four, the fever had gone and I felt better. By day five, I was tired but much improved. I coughed for about three weeks and have been feeling tired for two months, but I am totally recovered. I was amazed and surprised when I got tested and it turned out I had had coronavirus! I honestly did not think that I would make it with my low immunity, but I did, and I think that my immune system coped very well despite my PID. I should add that I am 46 years old with no other underlying condition except hypothyroidism.
I would tell anyone who suffers from frequent infections not to give up until they have an answer that explains why they are happening
Always stay positive and things will be OK again. It’s about managing the condition in order to create the life that works for you. It’s also important to have boundaries and tell people that you don’t want to see them if they have an infection.
Sometimes people don’t know about PIDs and that’s OK, they don’t have to, but you have to protect yourself. I would also encourage anyone who is finding the diagnosis difficult to cope with to go and see a therapist.
PID UK has helped me understand that I am not alone
PID UK has been fantastic in terms of the clear and concise information it has sent out to the PID community during the pandemic. Having PID has made me a more compassionate person and for that I am grateful.
I wish the general public had a greater awareness of PID, so that we could gain more understanding from others
I feel that, because I look normal and you cannot see my disability, I get little empathy from friends and some of my family. Many doctors do not seem to know about PID either. No one has heard of it. It would be fantastic if children with PID could be supported and understood at school, and if the workplace could be adapted so we did not have to work and isolate at home. If the expression, ‘I have PID’ were as familiar to people as the phrase, ‘I have diabetes’, life would be so much easier.
Posted July 2020