Juggling My Health with POTS, MCAS, Chronic Gastritis, and Endometriosis
April 3, 2023
What have you been diagnosed with?
How did you first notice something was wrong with your health?
I first noticed something was wrong with my health when I almost fainted after having a hot shower before work. My parents had to call the ambulance, but my observations came out fine. A couple of months later, I had heart palpitations due to my MCAS late at night. I technically diagnosed myself, but it's a long story. I realised what it was from a simple Google search at first (POTS), and then eventually had more hospital visits and a cardiologist professionally diagnosed me.
When did you first start experiencing symptoms?
I first started experiencing symptoms almost three years ago now.
How did you go about seeking a diagnosis?
First, my mum and I spoke to a physician at a hospital (this is about POTS). I mentioned that a friend of mine had POTS (I am the friend), and I asked if it could be this. She said yes, it's highly possible, and referred me to a cardiologist, where I was then diagnosed. I've been to so many specialists seeking other answers that I cannot count. It was easy to get an endo diagnosis as I had been experiencing pain and other symptoms for years. I had a laparoscopy, and it was confirmed. I got diagnosed with chronic gastritis this year but was not even going to be told because it's 'common'. ALWAYS read test results, please!
How long did it take for you to receive a diagnosis?
For my POTS? I pushed for an answer and always will, so it took a few months. Luckily, I got in quickly. But the waiting time before I Google searched was a few months of hospital visits, and being so weirded out, not knowing if I was dying or what was happening to my body. For my endo, the diagnosis was pretty quick, so I was lucky. As for the chronic gastritis, well... they weren't going to tell me because it was 'common'. Let's just say I had to manipulate the medical system because I caught on pretty quickly that they would not pay attention nor listen to me about my medical issues and would gaslight me instead. (Not manipulate in a bad way, but push and be very direct to them about my health issues). At first, I was told I had anxiety and depression, and these flares were panic attacks.
How did you feel when you received your diagnosis?
I felt upset. For the first time in my life, I had something wrong with me. And with my heart too. And then my body. Unexplainable symptoms. My depression came back. My depression resurfaced, and I experienced a constant state of anxiety, worrying about my health and not wanting to be here. At the same time, I felt a little proud because I knew there had to be something causing these symptoms. These symptoms were not like me at all. And it was not anxiety. Everyone didn’t really believe me at first, but they did after my specialist diagnosed me. With other diagnoses, I always felt like, "Oh yes, I knew it was that," that proud feeling. Having more answers means more help, but it can also be shattering because all you want is to be healthy again. It's really sad.
How did you communicate your diagnosis with your loved ones?
I was telling most of my family about my theory of POTS long before I was diagnosed. My parents listened but said not to jump the gun. They believed it could be anything. But in my heart, I knew.
What treatments have you undergone and how have they impacted you?
I take heart medication, and I've had day surgeries (for endometriosis and chronic gastritis - to diagnose it) along with other tests to help identify things that happen in my body, such as CT scans and ultrasounds. It always helps to get answers, to be honest. I also take lots of natural supplements that help so much with my MCAS (my naturopath thinks I have it), and my sister was diagnosed, so it makes sense. I changed my diet around, and there's sooo much more to it.
What is the most difficult part of your treatment, and how do you manage it?
The most difficult part of my treatment is taking medication that I know could one day affect my body in a negative way. It scares me, so I try not to think about it. I believe in both medical and natural approaches, maintaining a balanced outlook. While I need these tablets, it's still hard to deal with. Additionally, having to go to the gym is challenging because I don't enjoy sports or exercise, but it's necessary for me. It can cause a lot of pain and leave me down for a week or so. Sounds like I’m complaining but I need pain management. Because it gets bad…
“I am slowly realising and understanding that I am not a burden, even though it's hard.”
What has been the most challenging aspect of living with your condition?
The symptoms are the most challenging part, as they have caused me to miss out on things with friends and have taken a lot from my life. However, it has also brought positive things in my life too. I have met so many wonderful people from the chronic illness community, but I have also experienced the loss of some people in my life.
Not being able to breathe is particularly scary, along with heart palpitations, headaches, migraines, random chest pains, weakness in the limbs, and pain all over the body. It's also difficult to cope with the fear of burdening others, but I am slowly realising and understanding that I am not a burden, even though it's hard.
How has your daily life and routine been affected by your condition?
I have a part time job, and I cannot work as much. I can’t see my friends or drive as often. I can’t sleep as well. I have medical anxiety which is almost constant. The life I live is very different. Very challenging. It’s hard not to separate my mind from my body so I can try to enjoy life sometimes. I have to park in disability parks sometimes and have special privileges from that (I have the car sticker thing). Waking up one day realising your life will never be the same is hard. Even saying that you are disabled when you don’t look it, but you’re definitely not able-bodied, is hard. I remember a time I went to go and get groceries (my first year of having this) and I fell to my knees out the front of my house because I couldn’t walk.
How has your condition affected your mental health and emotional well-being?
I had depression towards the end of the first year. There’s just not enough answers, so many hospital visits, too much gaslighting from doctors. If we had more support I don’t think we would be as scared (when I say "we," I mean the community).
What strategies have you found helpful for managing your emotions and thoughts?
Therapy, talking to my family or friends. I am SO lucky and blessed to have amazing people in my life who support me so well. My platform allows me to educate and vent too! I used to have really morbid humour and thoughts like ‘well if I die now it’ll be painless and I won’t be in pain anymore’ but hey I changed my diet and my body has worked a little differently since then… I also just constantly try to take care of myself and my body. I have a routine now, and I’m so proud. I have books! Read books! When you’re in pain, or you can’t sleep, READ! It helps so much I couldn’t recommend it more.
How has your diagnosis impacted your relationships with your friends and family?
It has been difficult because people don't always understand at first. But when they try to understand, it's good. It took a while, but they definitely understand more now, just like me. My friends are AWESOME and quite understanding too. However, it is uncomfortable for me to tell people that certain smells or foods can trigger my breathing, as I don't want to burden them.
What support systems have been helpful during your health journey?
Rough patch counselling, therapy, family, friends, books, and ROUTINE! Taking care of yourself is crucial. Despite having ADHD, I have built a routine and try my best to stick to it. I am not hard on myself when I forget or don't manage to follow it perfectly. I make an effort every day for myself. Good energy around you and hobbies are important too! I love TV shows because they allow me to get lost in another world for a little while, which can distract me from the pain.
What advice would you give to someone who has recently been diagnosed with your condition?
Please reach out! On social media, there are so many platforms that can offer help and support. However, try not to read too much into the really morbid and sad ones, because although they deserve validation and support, it can be scary when you first start out. Remember that not everyone's experience is the same, so you don't know exactly what will happen. If you can, do your own research from articles by scientists and doctors in your spare time and only when you have a sound mind. If that's not possible, talk to someone who has the same condition and let them know you're anxious! Don't hesitate to talk to friends or family to get the support you need. Remember, you're never ever alone in this journey.
What advice would you give to your past self if you had the opportunity to go back in time?
Please eat better and take better care of yourself. You deserve it. And remember, it wasn't your fault. No matter how much you feel like it is, it's not your fault that this happened to your body. It's okay to take responsibility for it now, to help take care of and love yourself, but please be kinder to who you are. Your life really will have meaning. You have the power to give true meanings to your every day and decide how you want to live. You are loved, and you will grow, and things will get better.
How can others be more supportive and understanding of people with your condition?
Just educate themselves when they can! There’s no need to go out of your way because we all have lives to live. Be considerate of others and always be kind.
Looking for support and resources as a fellow POTS warrior? Click here.
Seeking MCAS support groups? Click here.
Find support groups for individuals with gastrointestinal conditions, here.
Find support and learn more about Endometriosis, here.
Are you a chronic disease warrior, or know someone who is? We would love to hear your story! Contact us at firstname.lastname@example.org to find out more about how to get featured on Jonda’s Patient Voices. Let's inspire and educate others facing similar challenges by sharing our unique health journeys and raising awareness, together.
Disclaimer: Please be aware that the content of this patient story, is solely the viewpoint of the individual(s) involved and should not be considered as medical advice.