Isabel M. from Chaps, New Mexico is living with Hypermobile Ehlers-Danlos syndrome, or hEDS. At the age of 22, she’s already seen a lifetime of diagnoses. She’s spent half of the past 2 years recovering from 5 surgeries and at the time of this posting, will be recovering from her 6th. And in her words, managing multiple conditions is like being an old car. You fix one part and before you know it, another has broken.
Below is her story…in her own words.
What prompted you to seek medical help for your condition(s)? What did the timeline look like?
I always had issues as a kid. Constant ear infections, allergies turning into bronchitis, constipation, and I remember vomiting a lot.
- My health issues started becoming more prominent when I turned 10 and went through puberty. I started dislocating both knees at random.
- When I turned 14, I started fainting or near fainted when I would stand up. Then it disappeared as fast as it showed up. Migraines started around this time as well.
- My digestive issues kicked up at 15. I had my gallbladder removed because it was only working at 17%. After surgery, I would be in the bathroom 5 times a day or more.
- When I was 17, going to university, I started going to the bathroom 8 times or more a day. My stomach would cramp up at random all day long.
- At 18, when I had to leave school, I found out I had bleeding ulcers, which recurred about 6 times after that.
From then up till now, I have been diagnosed with erosive gastritis, IBS, lymphocytic colitis, chronic nausea/vomiting, 3 herniated discs in my lumbar spine, 3 collapsed discs in my cervical spine, Fibromyalgia, wear and tear throughout my joints (Arthritis), Dysautonomia (low to high blood pressure and Tachycardia- fainting), urine retention, dyspepsia that prevents eating with flare-ups, pelvic organ prolapse (bladder, bowel, and uterus), endometriosis, chronic pain, hypothyroidism, vitiligo and finally, the cause of most of it, Hypermobile Ehlers-Danlos syndrome. [Learn more at the EDS Society.]
They still suspect more issues, and I am barely about to be 22. I have had 5 surgeries in the past 2 years, with half of that spent recovering. I have another planned in 3 weeks.
I take about 17 pills a day right now, and unfortunately, it’s become hard to lose weight due to some of them. I try to stay as optimistic as possible, but now all I really want to do is help people with my story. I spent 20 years knowing something was wrong with me and having multiple doctors deny me help.
In October of 2019, my diagnosis of hEDS finally came. If I could help a person realize what’s really wrong with them is a form of EDS, well, I could save their life. My diagnosis saved mine.
What is the trickiest thing about managing multiple health conditions and what is your biggest support or source of comfort?
The hardest thing for me, at the moment, is not being able to drive and having to rely on others to take me to the doctor. I’m currently not cleared to drive due to my sporadic blood pressure changes and tachycardia.
Another tricky thing is feeling like an old car. You fix one thing and another thing breaks; it’ll cost you too.
I also will never be able to act like people my age. It’s hard watching everyone growing around me and I’m still stuck where I was 4 years ago. Mentally, I’ve grown stronger and have been able to go through more than most. I can say I’m proud to be who I am even if I can’t grow with everyone else.
My biggest support comes from my boyfriend of 7 years, my best friend, my zebra sister and my very understanding family. They stick by my side through thick and thin. Without them, I would lose everything important to me.
My main source of comfort comes from a fluffy blanket and my son (my cat, Pawquito) lying down with my boyfriend and I while we watch movies and shows together. Nothing can beat that feeling!
How do you determine your priorities for care?
This life would be harder without knowing my limitations. To reach my goals in life, I need to understand my limitations. Even if my goal for the day is to eat three meals a day, with success, I need to know what I can eat to achieve that goal.
My main goal in life is to become stable with my health, even if I have to fight for that.
The hardest part about taking care of myself is keeping my mental health in good spirits. I let myself release tears of frustration, but I always do my best to pick myself back up the next day. If my mental health starts to lack, my physical health will start to suffer as well. You can’t have one without the other. When my physical health suffers, so does my mental health. I think this happens with everyone as well. It’s a rough issue to work through, and because of that, I see a counselor to help me. I won’t ever be ashamed to say I need that type of help. I have had counselors help me through sexual and physical abuse trauma. I still use those skills to get through the issues I currently have.
Listening to my body is also a new skill I’m learning. It’s hard being young and knowing I can’t do everything, and that’s caused some friction when it comes to knowing my limits. I sometimes overdo it, and it’ll rarely be worth it. My goal with that is to learn my limits while also exercising enough to lose weight. It’ll be tough, but I’ll get there with time, just like I have with everything else.
What advice can you share with someone who has multiple conditions?
Trust your gut.
Don’t be scared to advocate for yourself because most of the time, these things aren’t in your head. If I had a quarter for every time a doctor told me it was my mental health causing all these issues, I wouldn’t be a millionaire, but I sure would have plenty of quarters.
Also, don’t be scared to fire your doctor and get a second opinion. Not all doctors are built the same and they may not be built for you.
They work for you!
What do you want to inspire in others?
My goal is to reach as many people as I can. Even if I’m not the most extreme case of Hypermobile Ehlers-Danlos syndrome, I understand the struggle that it takes to be heard. I didn’t start getting real help until I had a nurse practitioner tell me it was my depression causing me to vomit blood, and I believed her! I was convinced I couldn’t actually be sick when in reality, I had been masking my symptoms for almost 10 years.
It took my mom saying, “This isn’t in your head. You need to see a gastroenterologist right away,” for me to start the real process. She saved me then and now I can save myself from those types of doctors.
If I can save someone from that, I want to.
I’ve grown from then and I’ve had to tell older adults, who should know better, that disability can be invisible and it doesn’t have an age.
Imagine, these older adults were healthcare “professionals.” I will never stop fighting to save people who are just like how I was 4 years ago. I believe you. I will never stop believing your struggles. Please don’t stop fighting.
Isabel M. – Chaps, NM
Diagnosed with Ehlers-Danlos syndrome since 2019 (living with disease for over 20 years)