Hi There, Newly Diagnosed Chronic Illness Warrior

Hi there, newly diagnosed chronic illness warrior.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Welcome to the club that you never wanted to be in. This world can feel scary and overwhelming, and you may feel like you’re navigating through an absolute nightmare. You need to know some things, starting with the fact that you’re not alone.

First of all, many of us call ourselves “chronic illness warriors,” instead of “chronically ill.” Why you ask? Because we are a community full of badasses, that’s why. We overcome what seems like endless obstacles in our daily lives, and the obstacles that everyone faces are different. Someone may struggle with the lack of accessibility for mobility aids in many places, while another person may struggle to gain weight, as their bodies don’t take in nutrition easily. While those are not obstacles that I need to overcome at this time, I definitely have my own daily obstacles. As a person with hypermobility type Ehlers-Danlos syndrome, fibromyalgia, and myofacial pain syndrome, the majority of my struggles are related to joint instability, pain, and crushing fatigue. I struggle to walk down the street without dislocating something, and I definitely struggle with painsomnia. I’m not saying that life as a chronic pain warrior is completely awful, because it’s not. I’m also not saying that it’ll be easy, because trust me, many of our lives are anything but. Though all of our struggles may be unique, they are all valid and equally important.

In the days and weeks after your diagnosis, you may not know what to feel – you may be so full of emotions that you feel like you just can’t cope, or you may feel numb. You may feel relieved that you have some answers, or be absolutely terrified. You may be angry at the universe for putting you in this position. You may be incredibly sad, and grieving the loss of your plans for the future. You may feel all of that (and more) multiple times a day. I’m going to tell you a big secret to help process your emotions. Let it out.

If you’re angry, be pissed off. Scream and yell, throw something, do whatever is cathartic for you – so long as it’s safe. It you’re feeling overwhelmed, cry if you need to. Talk to someone, write things down, talk to a social worker…do what you have to do to get those feelings out there. It’s OK to feel like you’re in a very dark time, just don’t unpack and live there – absolutely seek mental health guidance if you need it. Anxiety and depression are often chronic illness’ handmaidens. It doesn’t make you weak, “crazy,” or anything else society can associate with mental health issues. It makes you a real person with real, valid issues. I myself struggle with general anxiety disorder and panic disorder, and I can tell you from experience, people can and do thrive with both physical and mental illness. Just keep in mind, if we repress our feelings, not only can our physical and mental health symptoms get worse, the path to acceptance is that much longer.

If you’re going to research, please look up reliable medical sources. Research is my jam, because I like to know everything I can about my conditions. It makes self-advocacy that much easier. I have personally found that looking through message boards to be a great way of finding out what people’s experiences are regarding a particular condition, but that is it. I try to find information on professionally vetted sites, like the Ehlers-Danlos society (or whatever organization that deals with your illness or disability), or the National Institute of Health (NIH), because I know that the information presented is complete and correct, where as message board information is not always correct. I have seen information in user posts that could quite frankly be considered dangerous, such as mixing medications that are both known to decrease respiration rates, which depending on an individual’s medical condition can cause serious injury.

Mixing medications is a serious business, and should only be done under the supervision of a trained medical professional. If you have a question regarding medications, always ask your pharmacist. They’ve gone through years of education to become experts in pharmaceuticals. My doctor readily admits that my pharmacist knows medications better than he does. If you’re in a pinch, the Medscape app is really helpful. There are both free and paid versions, and it has a drug interaction checker that is available in the free app. I find it very helpful for the times that I have questions, and am unable to speak with my pharmacist for whatever reason. Research is a great way to compliment doctor’s advice, but never replaces it. Please don’t use the internet as a substitute for a medical professional. If you have questions or concerns, always address them with a member of your healthcare team.

You will need to advocate for yourself, likely often and aggressively. I understand that doctor’s appointments are often frustrating, with a lot of information being thrown at you. If you have a close friend or family member to bring with you, that’s ideal. Another person in the room means another set of ears that can pick up any information that you missed.

No matter what, keep in mind that you are not just dealing with a doctor, you are dealing with a person. A highly educated human being who can make mistakes, someone who may be burned out from seeing so many people a day, or someone who is genuinely not familiar with your condition. Don’t be afraid to tell your doctor what you need. This can be illustrated with a quote from a very famous pop culture doctor, Doctor Leonard “Bones” McCoy from the “Starship Enterprise,” “Dammit Jim, I’m a doctor, not a mind reader!”

Finally, you will meet some amazing people, and some not so amazing people. Some people can’t understand that I am sick. I look fine. My hair is done, my lipstick and nails are done – I can understand some people thinking that I’m faking being sick. Some people don’t understand that I’m not faking being sick, I’m faking being well, and things like coloring my hair fun colors and doing my nails are sometimes very difficult, but I do it because it makes me feel more confident and unique. If you have those kinds of people in your life, it is perfectly OK to limit or sever contact with them. You should never have to feel invalidated by the people in your life.

Those of us chronic illness veterans know that this is an amazing, diverse community. There is nothing like hearing, “Oh my God, me too!” when discussing my illness or challenges, because there is a immediate sense of comradary and validation. We post hacks, tips and tricks, in the hopes that it will help someone else. And, if you’re unclear about something that your doctor told you, there is likely a fellow warrior with a good understanding of that particular issue that is only too happy to help. We lift each other up, validate each others experiences, and best of all, we know that when we are going through a terrible time, we are not alone.

We may never have wanted to be in this club, but here we all are. Yes, life with chronic illnesses can be exhausting and frightening, but there are moments that life is utterly breathtaking. We live with so many challenges, when those magical moments come along, they seem all the sweeter.

I’ll leave you with this quote:

“The strongest people I’ve met have not been given an easy life. They’ve learned to create strength and happiness from dark places.” – Kristen Butler

With much love,

Darcy

Gettyimage by: Nastco