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To Myself on the Day the Doctor Said 'Rheumatoid Arthritis and Sjogren's Syndrome'

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Breathe. Those tears will slowly begin streaming down your face, from fear of the unknown, but I am here to guide you. Right now, most of what you are hearing from the doctor is muffled. You are too nervous to focus on the small details, but it’s good that you brought a supportive soul with you. For the rest of your life, having friends and family members by your side will be one of the most important facets of this entire process.

You’ll look back on this day and realize it was the easiest part of the journey that is ahead of you. These diseases are here with you for the rest of your life, as difficult as it is to hear, but please, don’t let them define you as a person. Let them bring out those qualities within you that you never knew you had, like strength, courage, bravery and even the one which you think will make you weak: dependence on others. While not everyone does have the same symptoms, don’t be alarmed if, all of sudden, you aren’t able to do the same things that you were previously. Your life will change, and some days you may not be able to find happiness in anything, but that’s where your support system will come in handy. Weed out the selfish people in your life and cling to those who can offer you some laughs, as that is the key ingredient to stopping yourself from crying on a bad day.

You are very young to have this disease, but finding the right rheumatologist and primary care doctor who have your best interests in mind is the most essential thing right now. If after a few visits your specialist seems disinterested in truly helping you, please find a new one. Not every medicine that there is in the market will work for you, no matter how badly you will want it to. The good news is that you are living in the 21st century, and there is so much more that is available to you than in previous times.

A symptom you might not expect to come from your diagnosis is depression. If it does start to invade your mind, please discuss this with a professional. Waiting and hoping it is temporary and will go away won’t do you any good. Please also let the people who you feel closest to know that this is going on, as they are not mind-readers and can better understand what you are dealing with.

woman's selfie wearing a white tank top
Jamie

There will be days ahead where you are scared. This is OK; it really is. You have a chronic illness, and sometimes it is just too overwhelming to even comprehend. You have many resources and a community within your fingertips you can reach out to. There are people just like you who are blogging about their struggles with the same diseases, and it is inspiring to hear their stories and be able to reach out to them.

Everyone you encounter who tells you that you look good to them on the outside needs to be properly educated on invisible illness. That will be something you hear very often and will bother you to your core. There is a huge misunderstanding in the world that in being sick, you must look sick. Do your best to hold it together during these times.

Don’t look so far ahead of you; take life one day at a time. The way you feel could change hour to hour or day to day. Listen to your body because it usually is right. If you feel tired, you need to rest. Don’t try and push your limits because it will only make you more sick and take days to recover from it.

The last thing that I must tell you is that stress is your worst enemy. Stay away from it at all costs. The more stressful the environment, the more likely you are to feel symptoms. I learned the hard way, and all I can hope for is that you take my wrongdoings as a lesson for yourself.

Some say a positive mind will make your body feel better. However, for people with chronic illness, an understanding of what you are battling against mixed with a support system and the right doctors seems to be the best medicine. Keep breathing and remember you are not alone.

Follow this journey on The Autoimmune Blues.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 6, 2016
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