Someone I have recently had the opportunity to learn more about brought up a subject to me about marriage and chronic pain and the impact it has had on their marriage. This was actually amazing to hear because I rarely think about my personal marriage and chronic pain. My husband met me after I had learned the tools to manage pain naturally and I never really talked about it as it is one of biggest coping methods: the more I talk about pain, the more I think about pain, the more I think about pain the worse my pain gets. I guess I also subconsciously did not want him to see me as a TBI survivor and explaining chronic pain on a first date, especially when you are filled with butterflies and happiness is not really the best time to bring up brain surgery, and the journey of my life with chronic pain. I told him very early in our relationship about why I lived the way I lived and I can honestly remember how loving and supportive he was with absolutely no judgmental words. I believe that was the moment I fell in love with him. However, chronic pain (even though I manage it naturally and well) obviously affects every aspect of my life and every relationship: friends, family, co-workers, our children, and clearly our partners. I rarely think about how chronic pain affects my relationships because I truly have come to a good place regarding pain and not allowing it to interfere with my happiness and life. It is a lot of work and I honestly have to do things each day that may seem odd to the outside world and at times frustrating to others because I have to stick as much as possible to a routine in order to not allow pain to be my focus and to not go back to taking anything for pain from the doctors I used to see.
Here are tips I would personally give someone who lives with someone who has chronic pain: wife, husband, best friend, parents, siblings, whomever is closest to you in your life.
1. If your loved one says he or she is having a “difficult day” aka (pain so intense I need to just chill) and is unable to do this or that do not make them feel guilty for their decision. I understand how frustrating that would be for a loved one but I promise you it will lead to an argument and increased pain in your loved one which then leads to madness.
2. It is impossible for anyone to understand what living with chronic pain is like, especially when most of us look perfectly healthy on the outside. This I promise you: no one makes up having chronic pain. In fact most people with chronic pain never talk about it at all and try to not bring attention to their pain. Do not ever tell a loved one with chronic pain that he or she is being dramatic or worse say: I do not believe you. People living with chronic pain already feel pretty shitty about their diagnosis, never a reason to make them feel worse.
3. Knowledge is power. Chronic pain is now getting noticed and if typed in chronic pain in the new (not so new to many readers) Google or Chrome world, you would be given more information than I was able to find twenty years ago. Aside from the fact chronic pain was still a very foreign topic, the internet was not around. Caregiver stress is hard, what will make it ten times more difficult is having no knowledge of this invisible illness. I know three people who committed suicide due to chronic pain. Two of these person’s had chronic pain and the other was a person whose amazing wife had chronic pain.
4. Give your loved one credit and support. This is not an easy disease to live with day in and out. If he or she is doing something positive for their management of chronic pain, tell them you are proud. One of the biggest feelings that comes from having an invisible illness is guilt. Imagine you have been planning a huge vacation for your spouse and you are both beyond excited and even packed. Bam: you begin vomiting, have a fever, and are so acutely sick that you have to cancel the vacation. How guilty would you feel? You would think: “Holy shit, I just ruined my spouses week she was so excited for. I am so awful. Why did I have to get sick today??? She is going to hate me.” The guilt would eat you alive. Guess what, your partner would not be half as upset as you are and a good spouse would make sure you knew that. He or she would say: “It’s okay. Like you planned to get the flu. It’s not your fault. Yea, this sucks for both of us but come on let me get you some soup.” Same goes for chronic illness, except our guilt is chronically there. No reason to ever make anyone with an invisible illness feel guilty for something he or she cannot control. No one asks for chronic pain. The number one reason for death of people suffering from chronic pain is suicide: who wants to live in physical pain twenty four seven??
5. Love. Just love your partner. You cannot cure his or her disease. There is no FIX. Which brings me back to the difference between males and females. Men see a problem, illness, mistake and just want to fix it. If they cannot fix the problem they feel awful and inferior. Women do not always want a fix, they just want someone to listen to them. I know right? Most men despise talking about issues, while women actually need to. She does not want you fix her: you can’t. She wants you to love her and be there as she helps herself. People with chronic pain are so afraid of love. They are so damn afraid that if they trust and love someone with all their faults that they will be left because of chronic pain. The fear of abandonment and love of those with chronic pain is heartbreaking and to all of you with chronic pain could become a self fulfilling prophecy. No one is going to save you is the hard truth, however we do all need our loved ones there to support us as we save ourselves.
6. Psssst read the title of my post to all of you living with someone with chronic pain.
This post is dedicated to someone who you would never in a million years believe has chronic pain. She is smart, beautiful, empathetic, a giver, and a person anyone would be blessed to know. You are so much stronger than you think. If we took as much care of ourselves as we do others life would be a lot brighter.