I am The Voice of Chronic Pain - Part One: Spouses

I said to Gage when I started my blog, “If this blog helps even one person understand chronic pain, then I will feel complete.”

I have not helped one person. The wonderfully amazing fact is that since I started this blog, I have been contacted by COUNTLESS people, some telling me their personal testimonies and battles with pain, some asking for help, some wanting more information as to how to help a loved one with pain, some seeking medical advice and so much more. Through this blog, I am honored to say that I have helped many!

I started this blog because my Pain Counselor said that it would be therapeutic. When the President of my PT Facility “happened” to read it, she encouraged me to keep writing. She told me that “People with chronic pain need a voice. You should be that voice.”

Here I am, a disabled, thirty-one year-old newlywed (kind-of) who has a story. But, I have learned that I am not the only one with a tale to tell. Recently, a close friend came to me asking for help. She, too, was diagnosed with a chronic pain condition. She, too, is young. She, too, is married and a hard-worker and highly involved in a multitude of extra-curricular activities. At the beginning of this New Year, she emailed me AND her husband, begging for help. She did not want to live another year with the type of pain she had the year before, but she did not know where to begin. She did not know how to get help. She did not understand her choices. She did not realize how having a chronic condition would affect not only her life, but the lives of those around her. And, most importantly, she did not know how to involve her husband.

What many people do not realize is that when one person in a family has a chronic condition, the family has a chronic condition. I have written before that our Pastor said to Gage and me, “Gage, if Stephanie is disabled, then you are disabled. You are one.”

I have learned that it is not just my husband’s job to know about my pain – his role in my life is much greater than that! He is my Partner. He is my Team-Mate. He is my Other-Half. If half of me is broken, then all of US is broken.

Since July of 2009 (when I attained my back injury that never disappeared), Gage and I have been forced to recognize that he may be my husband, but he will also wear many hats. He will be my husband, my protector, my provider, my best friend, my nurse, my advocate, my errand-runner, my chef, my maid, my dog-walker, the person I turn to first with upsetting news, the person I turn to first when I make improvements, the person who encourages me when I do not want to do my PT, the person who dries my tears when I am sobbing in bed because I do not to wake up to another day of pain, the person who speaks on my behalf when I do not have a voice. When a wife (a spouse) has a chronic pain condition, the man is no longer just a husband (which is a large role to play in anyone’s life).

I have been asked time and again: What does Being One look like to a spouse?

Granted, I recognize that every marriage is different and may be built on belief systems different than those of Gage and me, but this is what it looks like in our marriage and what I would recommend for any married couple dealing with a spouse who has a chronic condition:

- When you are in chronic pain, you need support - physical and emotional. You can't get that by yourself. You need to involve your family and friends. You need to learn to advocate for yourself and, when you cannot, your spouse needs to learn to advocate for you.

- What is an advocate? In this case an advocate is someone who has your best interests in mind and is ready to fight for them – whether you are capable or not. I use the word Advocate a lot when I plan my medical appointments. A very wise woman (also a chronic pain patient) said to me, “Stephanie, NEVER go to an appointment alone. You will be emotional. You might not be able to hear what the doctors are telling you. Your emotions may take over and you may forget the questions that you prepared or the concerns that you have. Take someone with you who will advocate for you – someone who will not only wipe your tears when you hear bad news, but someone who will do that with one hand and write down notes with the other.” Since that wonderful woman shared her wisdom with me, I have not attended a single Specialist or Doctor appointment alone.

- Your advocate can help you outside of the doctor’s office, too. Gage knows my tell-take signs of pain. He keeps track of time when I don't. If I've been out-and-about for more than three hours, he checks in with me to see if I need to leave or if I can stay longer. Last Tuesday, he even lectured me for both cleaning the house and working on the budget for hours in the same day. Before Christmas Gage attended my PT appointments with me so that he could learn from Lori, my exercise PT, how to "spot" me at the gym; then he learned some myofascial release techniques from Nancy, my pain-management PT, so he could treat my muscle pain at home. We even used some of our Christmas money to buy a folding massage table so that Gage can help me with my trigger-knots at home without hurting HIS body. Your advocate is your PARTNER. When I feel better, Gage feels better. When I hurt, Gage hurts. Whatever your advocate can do to protect you, he/she must do it! Being an advocate is the greatest honor one can achieve – it is the honor of being the hero to the person you love most in life.


- One of the greatest things that Gage does is he has learned to not take my emotions personally. When my pain levels increase, so does my bad mood. This is a known given. Recently, after an incredibly painful day, where I admit, I was a bit of a witch, I apologized to Gage for being so awful. He smiled, wiped my tear and said, “No apology needed. I know it wasn’t you being cranky, it was your pain.” This is patience. This is mercy. This is God’s grace here on earth! As a spouse, you have the ultimate gift of grace that you can give to your beloved. Don’t keep that gift all to yourself!

- A husband should always validate his wife’s pain and avoid denying it. Saying “You’ll feel better soon” makes me want to scream! Saying, “It must be awful to hurt this much,” makes me want to melt in his arms. A colleague once said to me, “You never know how difficult it is to live with chronic pain until you have to live with it.” Boy was she right! Unless you live with pain, you cannot understand. You also, therefore, do not have the right to judge or criticize it. If you have ever had a migraine, broken a bone or threw out your back, try to remember that pain, multiply it by 100 then take away its expiration date. That is kind of what chronic pain feels like… Husbands, it is not your pain. Yes, you are put in the position of caring for the pain, but you do not have the right to define, quantify or measure it. You must trust your wife that when she tells you she is in pain, SHE IS. She does not want this burden – why would she lie about it? Trust her and support her. Chronic Pain is one of the most misunderstood diagnoses to bear – the greatest act of love is to help your spouse and share that burden in any way possible.


There are countless other things that a spouse can do to help the person with chronic pain. Some simple ideas are:
- Offer to help run errands or do the things around the house that are known pain-triggers to the one suffering.
- Ask – and ask often – How are you?
- Hug her (him) when she cries and feels controlled by the pain; don’t just say things to make her feel better, show her…
- Understand limitations – When I have to say “no” to an invitation because I am in pain, I already am upset. I already feel trapped. I already feel (unnecessarily) guilty for my restrictions. Giving me a guilt-trip on top of my own will not help either one of us, or change the fact that I am physically unable to go somewhere.
- Most important, celebrate my successes! If I went an extra hour without needing medication, CELEBRATE that with me! If I enjoyed dinner and a movie instead of just a quick drive through meal, CELEBRATE that with me! If I share with you that I was able to clean the entire house by myself without causing myself more pain, CELEBRATE that with me! If we are able to have a fun date night that is not cut short by the chronic pain curfew, CELEBRATE that with me! Find reasons to celebrate with each other – seeing the good as often as possible will soon start to outweigh those moments of excruciating pain – even if those moments never stop.

To the person with chronic pain reading this, I have learned that my husband needs encouragement, too! NEVER forget to say thank-you. ALWAYS acknowledge the sacrifices he makes on your behalf. TRY not to let your relationship revolve just around you; even though your Pain is a main determining factor in your life, there are other factors to keep in mind, too. When you are strong enough, say “YES!” When you are not strong enough to attend an event, but also not in debilitating pain, tell him to go places without you. When he has to stay home and care for you, acknowledge his huge sacrifice. Tell him how much you appreciate his help. Find ways to treat him, to honor him, to love him and to make him feel special.

Lastly, The New York Times published an article titled, “Disabled Spouses Are Increasingly Forced to Go It Alone” that cited that couples who are married where one partner has a disability are more likely to divorce (Kilborn, P., 1999). What ever happened to the “Through sickness and in health” vow taken on that serendipitous wedding day all those years ago? To remain a Team, to continue Being One, BOTH parties need support. Gage and I meet with our Pastor on a regular basis to discuss how to better strengthen our marriage that is under such stress, how to ensure that – even through the tough times – we continue to BOTH put one another’s needs first and how to carry each other’s burdens. My Pain Counselor has suggested that spouses need as much emotional support as the chronic pain patient. That support can also be found through: counseling, support groups, a good friend/confidant, online chat groups, your church, your family, your community. Whatever avenue is chosen, it is essential that both spouses recognize the need for help carrying these burdens that have been handed to them.

There are many ways that a person with Chronic Pain can be loved and helped by family and friends. Stay tuned for what friends and family can do in this multi-part blog series!