Advice for Someone Starting off their Chronic Illness Journey

Some of the most crucial catalysts for growth in my health journey have been resources and advice provided by others in the chronic illness community. Chronic illness veterans can provide the newly-diagnosed with practical life advice, encouragement, and even potential remedies when modern medicine fails us.

Many of the lifestyle adjustments, products, and information that have helped me the most since I first got sick have been shared with me by others with chronic illness (both online and offline), so I am always encouraging others with health struggles to find community and wisdom through meeting others in similar situations.

I’ve been chronically ill for a year and a half, and while I certainly don’t have all the answers, I try to share what I’ve learned with others who are seeking advice. If you or a loved one has just been diagnosed with a chronic illness, I hope the following advice is helpful!

1. Learn your body! You will always be the expert on your own symptoms. What you observe and record about yourself could be crucial in helping your doctor give you a proper diagnosis. For a long time I kept a journal of my pain levels and what I was doing around the time that my pain spiked. This journal actually helped me discover that diet can affect my pain (and later I tested positive for several food allergies—all due to my journal). Some of us may never find a cure or a diagnosis, but if you can identify the things in your life that make your symptoms worse (food, exertion, emotional duress, lack of sleep, etc.) you can avoid them and reduce pain or fatigue. This is DIY medicine at its finest! 😊

2. Be open with people you trust about your health struggles. If you can help them understand how you feel, they can help make accommodations. For example, I have told close friends about my chronic pain and fatigue in order to help them understand I’m not “ditching them” when I don’t spend very much time with them — it’s just sometimes I’m way too exhausted to hang out. Also, don’t be afraid to ask for their help when you need it!. I used to hate asking for help, but now I always ask Josh (my boyfriend) to help me carry up groceries to my third floor apartment because that much exertion could ruin my day from pain and fatigue. Or sometimes I’ll have him drive me home if I’m feeling faint after a POTS episode. The people who love you will support you, even when it’s inconvenient.

3. Learn to say no to things. It sucks, but if you experience chronic fatigue, you won’t be able to accomplish all the things you used to in a day without harming your body (and it’s ok—it’s not your fault). I’m not sure if you’ve heard about the spoon theory (worth looking up) but the concept is that you have a small, finite amount of energy each day that gets used up over time as you complete various tasks. Prioritize everything you have to do, and use your spoons on the things that matter the most first!

4. Pursue a diagnosis (and don’t stop!!!). My diagnosis journey has been one of the longest, most expensive, and most frustrating experiences of my life —  but I have no regrets. If you can figure out what health problem(s) you have, you can actually do something to positively impact your quality of life. It may seem daunting at first, but don’t be afraid to do your own research—most general doctors know hardly anything about less common chronic illness, and you will have to self-advocate constantly. But don’t give up.

5. Don’t self-medicate with caffeine. It seems like a good idea, but, sadly, no amount of coffee can cure chronic fatigue. Your body will make you pay later.

6. Find community! Read other blogs like mine, talk to people, find support groups—do whatever makes you feel less alone. Believe it or not, 45% of Americans live with a chronic illness. It may seem like you’re the only one who feels like their body is falling apart, but you’re not! Be honest with others about what you’re going through, and you’d be surprised as to how many people will say “Me, too!”

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