My Illness may have my body, but it does not have me

by Amy Fisher
Listening to your body when you have chronic illness

“Chronic illness is one of the most challenging things I’ve ever had to go through in my life. It often feels nearly impossible to wake up every morning and continue the fight. There have been so many times throughout my journey where I didn’t want to fight anymore, wanted to give into my illness– let my body win.”

I first started becoming experiencing various symptoms in 2013-2014 and since then it has been one hell of an uphill battle, involving frequent hospital admissions and medications just to keep my body breathing and functioning half normally.

I battle with Dysautonomia and some of the illnesses that affect me the most include Ehlers Danlos syndrome, Postural tachycardia syndrome, Gastroparesis, and on top of these Chronic fatigue syndrome and Hypokalemic periodic paralysis which aren’t related to my autonomic nervous system (Dysautonomia). It wasn’t until I found something called the spoonie community on Instagram, it’s a large community made up of thousands of people suffering with chronic illness, and we all stick together and support each other with anything and everything. I have met so many people through my account and my little spoonie family is what keeps me going.  

I feel it’s important to connect with people your own age who are going through similar suffering—this is what the spoonie community allows people to do. I joined at very end of 2015 and since then I have gained thousands of followers (I now have 16,000 which is absolutely crazy).

I’m constantly getting messages from people telling me that I’ve inspired them to join the community and share their journey. This is more than I could ever ask for– inspiring and connecting with spoonies like me is all I’ve ever wanted to do. It brings me so much comfort and joy that I can help people in need, and support them in anyway possible, just as this community has done for me. My direct messages are always open to everyone and anyone (Instagram is @Chronically.ams)! 

This community saved my life, it’s helped me through some of the toughest medical battles, both physically and mentally, which is why I know I couldn’t have gone through it without spoonie support.


So here are my top 3 tips to surviving chronic illness. 


1.  NEVER GIVE UP (Probably one of the most important tips).

No matter how hard it gets no matter how impossible it seems, don’t give up because the second you give in and give up, it’s over. Never stop fighting! The process to diagnoses for chronic illness is a long road and a very difficult process, but you CAN’T give up. You have to keep going back to your doctor, push for answers until you come across a doctor that takes you seriously and pushes for you. You know your body better than any doctor and when you know something’s wrong, it’s wrong, and sometimes you have to push the medical opinions aside because you know what’s going on better than anyone else, better than any doctor. 


2.  Support Sytems

I’ve already mentioned how the chronic illness community saved my life and I recommend anyone who isn’t a part of it to make an Instagram account and jump on board. I know it’s hard because not everybody has a support system like family members, or friends and partners and if you do they’re not always going to be able to understand what your going through because if they’re healthy, they don’t know what it feels like feel sick all the time. So it can’t be all their fault, and we can’t blame them for not really understanding the suffering we go through on a daily basis. This is why it’s so important to connect with people that do understand you and are going through the same situations. There are plenty of forums for different illnesses and Facebook pages (if Instagram doesn’t appeal to you. It can be scary to put yourself out there, but trust me, the love and support you will receive from this community is so worth the effort. 


3. Listen to your body, Pace Yourself.

This is my final tip– it’s simple, but must be followed. Take everything one step at a time. Cherish every good day like it will be your last, and on your bad days, rest and take it slow, but always look forward to your next good day. Chronic illness has given me a new look on life, I never taken anything for granted anymore. As ill as I am, I know there are always people who are worse off and it makes me appreciate what I am still able to do. Life is short and can be extremely hard at times. Some days, it gets so bad that it makes you question what’s the point? Why was I given this life of endless suffering? And is it worth it to keep going on feeling like this? The point is living! Just being able to see, hear, smell, and feel is a gift in and of itself. It is the small things that we learn to appreciate. Yes, I might not be able to go for a run or eat food, but look at all the small things that I CAN still do. Lots of people focus on the negative, but it’s the positives that keep you going, as small as they may be, you have to focus on the good. That’s the only thing that’s going to get you through this. 


Join us in our Friends in the Fight Group to connect with our community. 

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