How to Grieve Your Life Before Lyme Disease: 9 Ways to Process Pain into Power


March 23, 2019

We can get so caught up in treatments and pressing forward that the topic of Self-Grief, (the process of grieving your “former” self) is a rarely spoken about issue within the Lyme Disease, Chronic Pain and Illness communities. Many people frequently experience hardship over not feeling like their self that they used to be. They cannot do the same hobbies, have the same friends, etc. However, if you allow yourself to go on this journey of self-grieving; you often will end up learning your own goals and true self better than you ever could imagine.

1.       Allow your mind time to catch up to what your body is going through and has gone through.

Did you have a full-time job? Were you in school to finish a degree? Could you shower, put on makeup, get dressed and STILL have energy to go out or socialize? Me too. The changes that happen when serious illness enters your life is a whirlwind of loss to say the least. As if a category 5 hurricane crashed through every single life plan and goal that was once laid out before you, it takes time to come to grips with the losses and to establish a course of action. Don’t expect yourself to be able to process all of these at once. It will come in waves, ride them instead of bracing for impact.

2.       Accept limitations without settling for less.

Living with limitations does NOT mean a life half empty. It may take you longer to complete a mentally draining task, but you can do it. You may need assistance with walking, driving, or even self-care but at the end of the day you are not doing less…in fact, you are doing more because you have to now learn how to achieve all of those check marks by your to do list (even if it’s a mental list) in a totally new fashion. Accepting your difference will never make you less than another, it only empowers you to reach your goals by whatever means necessary. 

3.       Avoid romanticizing your time before illness.

This is a BIG one and honestly one of the hardest for me. We’ve all heard those stories about the “good ole days”. The good ole days of someone’s football triumphs, crazy parties and cross-country love affairs make for great Netflix specials but are often far from reality. However, they serve as great examples of what not to do. Think about it, when you see characters that do these rose-colored glasses reminiscing, they are not typically the most fulfilled individuals nor the most cheerful. Putting a version of yourself or even a time period in your life on a pedestal only breeds bitterness and strife. We can remember fondly times before disease raised its ugly head but allowing thought patterns to form saying “the good days are behind us” only gives depression, angst and hopelessness take root.

4.       Set new achievable goals.

Is there a book you’ve always wanted to read? What about a topic that has always peaked interest? After facing the reality of your own mortality, there is a certain freedom that follows. The societal norms get pushed aside and you are truly free to do and be whatever it is that you desire. Grow how you want to grow, heal what wounds your heart tries to hide, embrace life in all its sublimity. The possibilities are endless. So, what if you physically can’t climb Mt. Everest! Most people can’t. You have your own Mt. Everest within you…start climbing!

5.       Understand and forgive that most people will not be able to comprehend what you have experienced.

“You don’t get it until you’ve got it.” One of my Lymie friends says that all the time and I love it! Because it is so very true! Think of how hard it would be to explain the sunset to someone that is blind. Or what a flower smells like to someone who cannot smell. (I had a friend that couldn’t smell, its hard to do…trust me). The same goes for life with Lyme Disease. No one else will ever fully understand the struggle of having doctors turn you away or feeling like your body has turned against you. Good luck explaining how you miss yourself to someone that has never walked that dark and terrifying path. But that is why we have a community like this in place. We know. We have been there. We are still there. Forgive those that don’t understand. They won’t get it until they have it.

6.       Dream a new dream for YOU!

Just because the life you dreamed of didn’t play out doesn’t mean you cannot develop a new dream. Guess what, most people have multiple dreams in a lifetime. You may feel like it is too late in life to start dreaming and reaching for a new purpose; but it is never too late! We never stop growing as people and should never stop learning. Why not carry that on into your life path too?

7.       Release your bottled-up emotions.

Cry, scream, break cheap plates you buy from a thrift store. ANYTHING! Those feelings of guilt and pain flow especially well when breaking things. Don’t ask me how I know, I just know. You don’t always have to be the strong one, the inspiring one, the funny girl or guy. If you are sad, be sad. It really is that simple. We were given emotions in order to feel and connect to the reality around us; to experience life in all its majestic chaos.

8.       Get involved with your fellow warriors.

Want to feel a sense of purpose again? Missing that social interaction you use to feel when you were able to be a “functioning member” of society? Open up about your struggles. Reach out to other Lyme Warriors and Pain Warriors. When you form a connection based upon using your pain for power, you will see that your story is so powerful. Even if you don’t want to go public about your journey, simply reaching out to someone that is struggling can be a great source of personal achievement and satisfaction. If you are a real go-getter, my fellow over achieving warriors, get involved in a nonprofit organization. Take up donations for a charity. Watch that goofy live feed, share the fundraising events, comment and let a writer know you enjoyed their piece. There are so many ways (big and small) that you can get involved and spread some love.

9.       Learn to love yourself and your body in the present condition.

Instead of the running narrative in your mind (and possibly out loud) that “my body hates me”, “my immune system is weak”, “this will never change”, “I will always be in pain”, or even “I can’t do this anymore”; fill your mental space will reassurance, love and acceptance. Your body doesn’t hate you. Your immune system truly is doing the best it possibly can and just needs your help. This is the only physical form we are given and therefore our one true and original ally in this fight for survival. Your body is already under attack for a large majority of the day, don’t allow your own mental consciousness to become another battle for it to wage. Become your own ally. Take medications, meditate, eat healthy foods and nurture yourself.

10.   This one is up to you!

This is no one else’s journey but yours. At the end of the day, you are the one that holds the only power in this situation. Yes, not even your disease is more powerful than the essence of you. While disease may wreck our bodies, YOU are still in there. Your essence, soul, spirit remains regardless of the physical shell it inhabits. So, we here at Lyme Warrior want to hear what additional steps you are taking to make this chapter your new “good ole days” story origin.

How to Grieve Your Life Before Lyme Disease

In Lyme WarriorLyme DiseaseShare 22 Likes


    1. I totally agree I haven’t grieved the person I was before my mental health got so bad and worse yet my health challenges. I try not to think about what I’m missing, it’s not a good use of time and it makes me sad. I hope you are doing well, I know all this trauma going on around us is affecting you. Take care. 🙂

      Liked by 1 person

      1. I had a trigger and switched to a preverbal self. I guess it has something to do with the freeze response: playing dead as self protection. An old friend called from Vancouver and told me I needed to keep writing, he reminded me of why I chose to be a writer and that broke the ice.

        Liked by 1 person

  1. I think that’s a really great point about not romanticizing your old life. It’s an easy thing/cycle to get into when our current lives are such a struggle. If you look back, objectively, often our old lives were not all roses. Great post, Melinda!!

    Liked by 1 person

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