Didi is only 17 years old, but she has had an experience many adults never have throughout their lifetime. She has been ill for a long time. She is officially diagnosed with Postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS), joint hyper-mobility, and gut dysmotility. Combined, all these conditions make her daily existence hell.
Didi was not always a sickly child. As a child, she was very active in all senses of the word. She loved participating in horse riding, trampoline gymnastics, and swimming. She was considered overall to be very healthy. However, from the age of about seven, the story changed for her. At first, she began to have frequent stomach aches and bouts of nausea, in addition to joint pain. Then, the symptoms got worse with dislocations. Her first dislocations were at her hip region.
On a fateful day, she had gone for her usual swimming lessons. It was routine, so, there was nothing special about it, nor did she think that something would happen to her. Suddenly, her hip bones popped out as she completed her breaststroke. She cried out as the pain was intense. No one understood what she was talking about, and neither did they know how she felt. As a result, a GP gave her some mild pain medication and dismissed the case.
That should have ended her ordeal, but she was in for a long journey. As time went by, Didi kept on complaining about the sickness to her teachers and parents, but they all dismissed it. They believed that there was nothing wrong with her, and if there was anything, it could not be more than school stress.
The situation continued for a long time. The pains would come, Didi would complain to her teachers and parents, and they would simply dismiss it. Because of that, it took several years before anyone believed her enough to take her to a specialist. Eventually, her visit to the specialist became the turning point she had craved for a long time. The doctor informed her that she had Ehlers-Danlos Syndrome, which had been the underlying cause of the numerous episodes of sickness and pain. Getting a diagnosis from the specialist brought Didi great relief. It was a huge weight off her shoulders to know that the strange condition had a name after all. She was beginning to think that it was all in her head when no one believed her story. Finally, people were going to listen to her, believe her, and pay attention to her health.
With the diagnosis, Didi continued to manage herself. However, five years later, when she was 12, she started having new symptoms. The development baffled her as they were strange. For no apparent reason, she would randomly blackout, have distressing palpitations, and experience hot flushes. The new development brought a fresh source of concern to Didi and her family. They began the strenuous journey to find the diagnosis and cure. It was no small feat as everybody seemed to know nothing about what was going on in Didi’s body.
After a long time of pain and seeking answers, a family friend of hers who also happened to be a doctor suggested PoTS, and it became a new line of theory. Following a tilt table test, Didi was confirmed to have PoTS. She was only 14 years old at the time. Due to her young age, it was difficult to get the doctors to listen to her and offer any practical advice. This aspect is an ongoing battle for Didi, and she has learned to cope with it over time.
In her fight against PoTS, she offered to participate in trials involving multiple drugs, some of which left her with horrible side effects. Some of the side effects include depression, nausea, etc. She has been a bit of a guinea pig, all in a bid to get solutions to what is wrong with her.
Many years passed by, but Didi continued to daily suffer from PoTS. Some symptoms she experienced include blackouts, nausea, migraines, chronic fatigue, tremors, and dizziness. In the prime time of her life, Didi could say that she had taken more medication than anyone 17-year-old should ever have to swallow. On a good day, she took 9 pills, but on a bad day could mean taking as many as 18 pills. Unlike every other child out there, Didi does not have the grace to enjoy a well-developed immune system. A small illness such as the common cold could knock her down and keep her in a state of ill health for several weeks. Therefore, she took extra care of her personal hygiene, especially in public places.
Didi has had to give up many things she loved, such as sports. PoTS also altered her routine. For instance, she could no longer stand up in the shower, and she often finds herself having to lie down in very public areas. It did not matter if she was in the middle of a cereal aisle in a supermarket! As long as it was needed for her to feel normal, she did it.
Skills such as learning how to drive were already out of the question for her a long time ago; Didi gave it up for PoTS. It was meant to be an impressive milestone, but she understood that life was what it was. Her gap years also fell through. The institute where she hoped to study categorically told her that she would be asked to leave if her illnesses affected her learning in any way.
Sometimes, Didi feels that had been unkind to her. She has done nothing wrong to get these types of bitter lemons, but she also made up her mind to make the best lemonade out of them. Instead of focusing on the negative aspect of PoTS, she would choose each day to count her blessings. One of such is one good and very furry friend she made. She got a puppy! She has always been an animal lover and is eager to own a dog. So, Didi hopes her new pet, who she named Coby the Goldendoodle, will become more than just a pet for her. She will make her pet her best friend ever.
Didi hopes she can sign him up for medical detection classes to get him registered as her service dog. That is saved for the future. Now, however, she was just grateful for the positive influence he has on her life.
PoTS has taught her that she could cope with anything as long as her mind was made up. She might be young, but she has a rich history. She has learned yoga, changed her diet by going gluten and lactose-free and does not joke with short naps throughout the day. Her new diet manages her stomach swellings, but the pain still gets through to her. Although it is not easy to always remain positive, Didi does her best. She also discovered that talking to others in the same situation makes her feel good. These people have become a new family for her. Together, they will ease each other’s pains and conquer PoTS.
Amidst the battle against PoTS, Didi has held on to a popular saying that had become her mantra. She adapted it from a life story and believes it applies especially to those who are battling a chronic illness like herself. It connotes what life is saying to everyone. “I will make you happy, but first, I will make you strong.”
