REAL FACES of HYPERMOBILITY:
Face #4: Tineke
Meet Tineke, a teacher and mother of two who lives with Hypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Disorder.
Tineke was diagnosed with EDS when she was 39 years old when her then 11-year-old daughter was being diagnosed. Up until that point in time, she hadn’t realised that others “weren’t like me”.
When asked about her earliest memories of hypermobility related symptoms she recalls being about four years old, sitting cross-legged on the floor and when standing up having to pop ankles and wiggle knees back in place to be able to stand up.
These days, Tineke says her most problematic symptoms are pain & exhaustion “I get overwhelmed at times with pain and exhaustion, it feels lonely…. Sometimes the pain gets me down. Living in pain on a daily basis from subluxation of ribs, shoulder and hips, or my chest feeling tight, heavy, and breathing is hard. It often hurts to sleep as my shoulders, ribs and hips don’t stay in place”.
Despite this, Tineke continues to work in her career as a teacher, albeit in a part-time capacity rather than her desired full-time role. She reflects “to teach new skills and provide experiences of learning that can lead to a better quality of life for students is very rewarding.” Although preferring to work full-time, Tineke realises that she needs to rest more than her peers which means working only three days per week.
Collaborating with a healthcare team for herself and her daughters is almost a full-time job in itself. “My girls’ doctor helps the most; she is kind and knowledgeable. We also see Physiotherapists regularly. We see many specialist doctors each year who tell us what is wrong but not really how to manage those diagnoses. Those include a cardiologist, allergist, GP very regularly, skin specialist, podiatrist, rheumatologist, and neurologist. I haven’t found many doctors that are holistic.”
Seeing this number of health professionals is not uncommon for people living with hypermobility conditions, especially those with co-existing conditions such as POTS and MCAS. Unfortunately, there aren’t many doctors who understand the scope of symptoms that come with hypermobility.
When asked about bad experiences with health professionals, Tineke recalls the time when one of her daughters was four months. “She wasn’t back to birth weight at four months old, and I was told it was because “she didn’t have the will to want to live”. The allergy clinic then diagnosed her with food intolerance, and she was given a special formula and quickly gained weight. I went back to that same doctor to say it was a medical reason and he said “she had decided to live”.”
I asked Tineke, why she was so happy to participate in The Hype About Hypermobility campaign, and she said:
“I feel like it’s important that people are reminded that no one knows what anyone else goes through. Pain doesn’t help you to be social; it is very lonely and exhausting. And 100% effort gives different results for everyone, for some, it’s getting up and out the door, while others can run 10kms or even a marathon. Everyone is different and acknowledging that is important.”
Tineke went on to say: “In our family, we are very flexible in body and mind and compassionate to others. We have developed many skills, problem-solving and adjusting tasks to make them doable. We have come to an understanding that things come in a variety of ways and just because something hasn’t been seen or happened before doesn’t mean it isn’t possible.”
Tineke’s last parting comment “living with these conditions… it’s important to have someone really hear you”.