Six years ago at the young age of 21, I got the diagnosis of Idiopathic Intracranial Hypertension. IIH is a chronic illness that makes your brain react as if it actually has a tumor but it does not. Your spinal fluid crushes your brain every day. Your doctors will tell you it’s in your head or to lose weight. Your friends will tell you to buy this or that and it’ll be your cure. Your family will think you’re an attention seeker. Your job will terminate you because you are always sick. At least all of those are true for me. I have been on an emotional rollercoaster ever since this journey has begun.
When I got diagnosed with my chronic illness I was totally a different person than I am today. Maybe that’s because I have literally gone through hell and back just to have people undermine my pain, or maybe it’s because I learned who I was during this journey.
I have been through many ups and downs during my very crazy, unpredictable brain journey, and I want to give five tips to whoever may be going through the same thing with any chronic illness.
Be your own advocate. I can’t tell you how many doctors I’ve seen who had no idea about my illness. I got so tired of telling the doctors what they should have already known, but it is so important to advocate for yourself, get second opinions at times, and know your body. You’re the one dealing with the pain and the only one who truly understands what kind of pain chronic illness can bring. Do not let anyone undermine you. Get answers and know your truth. That’s what matters.
Let people be. This has been a hard one for me. At the beginning of my chronic illness journey, I was so angry with being alone. I didn’t understand why people who were supposed to love me mostly gave up on me, but I had to understand that was their burden to carry and not mine. I had to worry about surviving. If they came around, great! If they didn’t, I wasn’t sweating it. I had to put myself first after so long of not doing so.
Rest. When I first got diagnosed, I was working full time, going to school full time, and was a full-time mama. There was absolutely no time to rest. I have learned that rest is so important. If your body is running on empty, you can’t be your amazing self at your full potential, and if you overdo it that could mean a hospital stay. Rest is crucial in chronic illness.
Find the love for something. My hobby is scrapbooking. It is my favorite pastime when I’m feeling good and makes me feel productive. I think this is so important because illness, especially chronic illness takes a lot away from you. It may take people, work, and activities you were used to away. So, find something that makes you happy.
Grieve. It is totally okay to grieve. I once had a counselor tell me that having one life than waking up in a totally different life is definitely considered traumatic, and I needed to grieve it like I grieved someone’s death. That comment has helped me more than she has ever known. You really become a totally new person after the other you basically died. It’s so hard and so incredibly painful yet so freeing.
Becoming a chronic illness warrior was never part of the plan whatsoever. I miss who I was and the life I was trying to create sometimes. I think of how some of my friends have gotten married, had children, bought houses, or graduated college over the last six years, yet all I’ve been consumed with is surviving but this was meant to be my story. I was meant to remind people they aren’t alone. Chronic illness has stolen so much from my life but has gifted me a thankfulness like no other. I’m thankful I’m still here, getting to survive and love my little girl, everything else comes second place. I have found an incredible tribe of people I don’t think I would have ever found without my illness and the appreciation for life that I have now. Even in the unpredictable, there is so much to be thankful for.
This story was submitted to Love What Matters by Amanda Hatley of Abilene, Texas. You can follow her journey on Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories from Amanda:
‘How am I 21 and this sick?’ The pain was excruciating. I saw the ER staff more than I saw my child.’: Single mom, abuse survivor shares battle with rare Idiopathic Intracranial Hypertension
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‘You’re just a whiny child.’ The doctor sent me home with pain medication. It was a miracle I survived through the night.’: Woman with rare chronic illness shares childhood spent in hospitals
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‘You have a tough road ahead.’ That was an understatement. I had to accept the possibility of dying before I really got to live.’: Chronic illness warrior says ‘I’ve so much to be grateful for’
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