by Mara Rose. Mara has been living with chronic pain and endometriosis for the last 15 years.
Your life changes when you receive a medical diagnosis. Since everyone processes things differently, here is what I’ve learned over the last 15 years of dealing with chronic pain and finally finding the answers.
Three weeks prior to marrying my best friend, I opted to have exploratory surgery. The result was endometriosis. At first, I was thankful to feel better and have an answer to all the pain! But looking back, there are a lot of steps or tips that would have been helpful in my new journey with life-long chronic pain.
So for my companions in conditions that cause chronic pain – here is what I’ve learned.
1. You have an answer. Now what? Take the time to be thankful… you have an answer! No matter how long it took you to get to this point… you now understand what is going on in your body. This is good news and doctors can treat it appropriately. Be thankful.
2. Process your new reality. Okay, yes, you have an answer, but what does this mean? Being diagnosed may require a bit of a grieving process. Chronic pain can also come with a lot of extra, frustrating symptoms. Try to remain as positive as possible. Do not let it defeat you.
3. Do your research and find support. Honestly, when I was diagnosed there weren’t people around me that understood what I was going through. My recommendation is to research and find online communities that share in your pain – literally. Understand your diagnosis inside and out. For instance, your condition may require you to change some of your eating habits or diet. There may be certain food ingredients that are important to avoid – for example, wheat and soy. It takes a lot of effort, but it definitely helps reduce inflammation in some people.
4. Don’t play the “what if” game. It’s really easy to fall into the trap of asking yourself “what if” questions. Believe me, I’ve done it too. “What if I can’t have kids” – is the biggest one. “What if I need more surgeries” or “what if I never get relief from this pain.” Don’t allow the disease to win by asking these questions. Chances are that if you have a great doctor that specializes in the source of your chronic pain, your surgeries and side effects will be minimal. We don’t know the future – so why worry? Take it one day at time!
5. Allow yourself one pity day. I’ll be the first to admit that sometimes the pain can cut straight to my spirit and ruin my mood. Yes, it is definitely hard to live with chronic pain – which is why I allow myself one day infrequently to feel sad about it. After that, it’s time to carry on with life and keep my head up.
6. Take it easy and know when to say no. Chronic pain can bring on a lot of additional symptoms, and fatigue is one of them. If you’re a social butterfly or have a busy lifestyle, it can be hard to miss out on activities and events. But sometimes attending an event can contribute more to your fatigue and pain. I’ve had to learn when to say no and actually miss out on some rather cool events. It’s disappointing, but I know when my body needs rest.
7. Stay positive and LIVE! It would be easy to spend all day, every day in bed. But where would that get me? Despite the fact that chronic pain takes a huge toll on our bodies – it’s important to keep moving and stay reasonably active. This will help your mood, energy levels and attitude. Remember that your disease can be frustrating but it doesn’t define you.
8. Stay away from WebMD. Sorry, WebMD, but your site can really be full of doom and gloom. The last thing we need is to worry more about our bodies. If you are concerned about something going on in your body, definitely contact your doctor or healthcare provider instead of searching online.
9. See an specialist. Unfortunately, there are a lot of doctors out there that don’t understand chronic pain and don’t know how to treat it. Keep searching until you find a physician who understands your diagnosis and has experience treating it.
This post originally appeared on WordsByMara.com and is reposted here with permission.
Mara Rose is a writer living with endometriosis, adenomyosis, fibromyalgia and degenerative disc “disease.” She lives in Wisconsin with her husband and son, Micah. She’s quite active in the endometriosis and chronic pain online communities, and she’s currently working to develop local patient mentor programs in her area.
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