CHRONIC ILLNESS SUCKS!
I found this photo on @irenestandsfirm and it is 100% what it has felt like for years trying to find someone who could diagnose "all the things" wrong with my daughter.
She had had non-stop health issues since she was 9ish and stopped dancing because her legs hurt so much. She was ALWAYS complaining about something and I was ALWAYS hearing growing pains or attention seeking. I took her seriously because I had so many of similar symptoms throughout my youth and they continue. But I had NO CLUE what to do or who to see. I was newly remarried & had the support of Steve and people in my family kind of got it. But we were taking hit after hit for so much as we tried to blend our families.
We found out she has inoperable, noncancerous, tumors in her spine. The Dr's told her she would be in a wheelchair by early 20's so she went WILD and lived it up. Broke her body and self-medicated. So many of you have followed my Mama's heart and grief through so much.
I lost years with my son and can't make up that time. I don't know what our bond could have been had all the "stuff" of blending the family and Brit's illnesses and I was a wreck ~ emotionally & physically. He got lost. 🥺 He didn't get my time & attention like he should have.
It's 2025 and my daughter has been clean & sober for years now. She has a child she was told probably wouldn't happen (Bug almost died at birth and Brit had complications as well.) After she has a horrendous fall that put her in bed for months she was referred to a Dr who put pieces together!! The issues people thought she/we were exaggerating...
👉POTS (Postural Orthostatic Tachycardia Syndrome)
👉hEDS (Hypermobile Ehlers-Danlos Syndrome)
Ehlers-Danlos is genetic!! So all the crap my Mom went through as a kid and I went through causes so much grief. What could our lives have been if only? Now Bug....she is already exhibiting some similarities. That is FRIGHTENING!
If you have read this far I hope what you gain from it is a sense of the strength and perseverance it takes. To fight your own demons. To fight against people who don't seem to care. The sheer importance of having support system surround you and encourage you; not belittle you.
That what you see on the surface is only a slight image of all that God has created. Under all the skin is a person who just wants to live..love..laugh and be accepted.
Having chronic mental & physical health issues is exhausting.
#chronicillnessjourney #ehlersdanlossyndrome #potsawareness #emotionalsupport
Chronic illnesses such as Postural Orthostatic Tachycardia Syndrome (POTS) and Hypermobile Ehlers-Danlos Syndrome (hEDS) can profoundly affect not only the diagnosed individual but also their entire family. POTS involves symptoms like rapid heart rate upon standing, dizziness, fatigue, and brain fog, making daily activities exhausting. Meanwhile, hEDS is a genetic connective tissue disorder characterized by joint hypermobility, stretchy skin, poor wound healing, and a range of systemic issues such as migraines, gastrointestinal problems, and cardiovascular complications including mitral valve prolapse. Understanding and diagnosing these conditions can be incredibly challenging due to their wide-ranging and sometimes overlapping symptoms. Many patients experience years of misdiagnosis or dismissal, which adds to emotional and physical strain. In families where multiple members are affected across generations, as seen with the genetic nature of hEDS, the impact multiplies, leading to shared struggles and fears for future generations. Early identification and a thorough clinical evaluation, including Beighton score for joint hypermobility and symptom assessment for dysautonomia such as POTS, are vital. Treatment often requires a multidisciplinary approach — from cardiology and neurology to physical therapy and mental health support — to manage symptoms effectively and improve quality of life. Living with chronic conditions like these demands immense resilience. Emotional support systems, whether from family, friends, or patient communities, play a crucial role in coping with the challenges. Advocating for oneself or a loved one during the medical journey can help navigate the healthcare system better and ensure appropriate care. The emotional toll, including feelings of isolation and frustration in the face of invisible illnesses, highlights the need for empathy and understanding from society. Sharing real-life experiences and raising awareness about POTS and hEDS is essential. It empowers others facing similar battles and fosters greater recognition among healthcare professionals. Despite the hardships, stories of perseverance, recovery, and the ability to live meaningful lives serve as inspiring reminders that chronic illness does not define one's worth or potential.
