An Impossible Handbook for Supporting the One You Love in the Face of Unrelenting Pain

An Impossible Handbook for Supporting the One You Love in the Face of Unrelenting Pain

Supporting my wife Brandie, who has a chronic pain condition, is one of the easiest things I’ve had to do in my life. The hardest and most gut-wrenching thing I’ve had to do in my life is to be in love someone with chronic pain. Loving her isn’t hard, that’s easy but because of that love just being in the presence of her pain takes me apart. You see I’m a guilt ridden control freak so taking care of someone I love comes naturally to me. I mean, I basically just have to remember not to flake out on stuff, right? Taking over the day-to-day care of our daughter Kelsey is some times a joy, some times an obligation, some times even a pain in the ass but its always pretty straight forward. I know what is expected of me and I’m in control of my actions. If I give Kelsey an amazing day or if forget to give her enough attention those are my choices – in the end I am responsible for my actions. My actions. On the other hand, seeing my wife writhe in pain, rock back-and-forth, to watch her undergo treatment after treatment, try medication after medication with no relief is unbearable. I am completely helpless. There is nothing I can do to stop her suffering. Nothing. On the practical support side there’s a shitload I can do. I can buy books on the brain, I can learn about nerve blocks and instruct ER doctors on how to administer them, I can schedule appointments, get her to them, buy her presents, tell her funny jokes, stroke her back or arm, tell her how much I love her, I can bitch out doctors that aren’t listening, make sure she gets the meds she needs at the scheduled time, blah, blah, woof, woof, ad infinitum. It doesn’t even really matter that for most of my life I’ve essentially been a flakey type of person who’s been able to get by on being pretty good at some things and who only works compulsively on things I’m “into it”. I love Brandie so I can be responsible, consistent, and diligent in supporting her. But when her pain is at a 10, which it has been more and more these days, it doesn’t matter what I do. There is only so much morphine you can give a person.

Dear reader (I’ve always wanted to say ‘dear reader’) you are probably better emotionally put together than me but when someone I love is hurting I somehow feel responsible and I feel his or her pain deep in my heart. It doesn’t matter if that pain is emotional or physical I can feel it. I don’t know why but I cannot comprehend how I can have a nice life when she is having day after day of 7-10 level pain without that making me a fucking sociopath. I mean everyone is troubled when someone they love is troubled right? But here’s the rub, if I am hurting every time she is, if I let it get to me every time, then I am not helping her. I am actually making her feel bad for feeling bad. How fucked up is that? She not only has to feel this incredible pain but she only needs to look at my face or posture to see what it is doing to me. This only makes it worse for her. What’s my alternative? Do I smile? Just continue enjoying our movie after I notice she is starting to moan? Well I’ve learned what to do but it is really hard. I just need to become present, not freak out, and give her my love. I become present because I don’t want to have to hide my despair or hide that I am having knots in my stomach. If I become mindful and present I won’t have knots in my stomach to hide. I won’t be doing a happy dance but I can prevent myself from despairing. Giving her love will relax her and since pain and anxiety go hand in hand this will be helpful.

Here’s another issue. If your partner has near constant, drug resistant, severe pain, you will eventually lose yourself if you don’t take care of yourself. And by take care of yourself I mean more than being present. We already took care of that with a little mindfulness. We are no longer making her feel bad each time she has pain. Good job! But still, you will lose yourself. You will lose yourself because you will stop doing the things you love, seeing your friends, and getting involved in life outside your microcosm of pain. Why will you do this? Well, because if you are like me, you will feel that the concept of having a life for yourself when she cannot makes you feel like a fucking sociopath. How can I go out and shoot pool, play music, check out the newest restaurant, or get fucked-up with friends, when I know she is at home and in pain? Well you can because you have to. Okay, so my friends will tell you that I have absolutely not figured this one out yet and they are right, but I am working on it. I know that if you don’t have a life you will become depressed and if you are depressed you are not helping your partner. And if you become depressed you will resent their condition and possibly them. Oh and resentment, let me tell you about resentment for a bit. You will feel resentment. Even if you do give yourself a life outside of the “pain cocoon” you will sometimes feel anger and resentment. But the trick on this one is to allow yourself to feel that resentment without guilt. Be resentful sometimes. You are not the fucking Buddha. It is perfectly natural to feel this sometimes, just feel it and then let it go. If your partner is one tenth of the woman my wife Brandie is they will understand that it is not only natural but also necessary. Just remember it is the condition and the situation you are resentful of and not the person. Even if you feel resentful at the person do not suppress it. If you suppress it you will nurture it until it grows into an uncontrollable dragon of fire spitting resentment.

You heard me mention being present and mindful? Yeah you are right, all three of us have psychologists. First for Brandie, then for me, and finally we found a psychologist for Kelsey. Chronic pain is something that takes over the whole family and it is important to have support from people without skin in the game. We have been very lucky to find what I believe are three of the best psychologists in Portland. It was really important to us that they align with our views on life and religion, which in our case means no religion. It is also important that we each have our own psychologist and that they are primarily concerned with their patient. We each have our own support. My therapist Larry has taught me a lot.

When Brandie has pain it won’t be okay and I never her tell her it will be. This was tough for me to learn. I love to fix things. At my core I believe all things will work out. Suppressing the desire to say everything will be okay is like telling someone with OCD not to follow through on his or her urge to lick a signpost, to go ahead and step on that crack, or not to flip a light switch the exactly correct number of times. Brandie has seen many doctors, had many surgeries, procedures, and treatments and they have all either made things worse or not worked. She does not need me telling her everything will be okay when she is crying through her third straight day of pain. I also don’t tell her all the different things we can still try while she is in pain. It makes me feel better to ask her questions about her pain and analyze her responses, it does not make her feel better. It makes her angry. She is in pain so I save this kind of conversation for when she is feeling better. Instead I try to relax her, let her know that she is loved. When she says it is not fair I agree. When she says that it is inhumane for someone to have this much pain and it not be terminal I agree. When she says she cannot take it anymore I do not say that she can. People who suffer like this want to know it is okay that they cannot take it, not that they can or to just “hang in there.” Hanging in there is for posters of cute kittens grasping a branch with their front paws, not for people with serious conditions. No one should have to endure unyielding pain.

And this brings me to the last and most difficult part of truly supporting the one you love. If Brandie eventually feels that no one should have to live this way, that we have exhausted all possible treatments, and that she wants to end this with dignity, I will support her. I will not try to convince her that she should go on for me or for Kelsey. She should not. No one should have to go through life this way with no possibility of relief. If Brandie wants to go to Switzerland or somewhere like that where death with dignity is legal for people with chronic pain I will go with her. Even though I am neurotically petrified of flying, I will go with her. I mean do I want her to continue the rest of her life suffering just so I can have her in my life? Or carry on because I am scared of being a single parent to Kelsey? Fuck yeah I do. But that is about me. That is the exact opposite of being a good support, the exact opposite of truly loving someone. Convincing someone to go on when their life is unendurable is about you not about them. I will do anything for Brandie. She is the love of my life and if being ready to do anything for her means helping her to end her life with dignity then I will and I will do it with all the love in my heart. But this story had a happy ending.

Its so nice to read this & realize that others are going through the same feelings as me. Its as if I wrote this myself...except for the last paragraph - I'm not there yet as this is still all fairly new to me. My heart goes out to you & your family & sorry to hear that she has not responded to any treatments. You sound like an amazing husband & I will strive to be equally as amazing to my fiancé & children. This blog really touched me & I will come back and read it again I'm sure! Thanks for sharing

April

Thank you April. Yeah, I never thought we would get to the place we did in that last paragraph. At this point it had been years of surgeries, MANY different medications, doctors giving up with the only constant through all of this being an increase in the frequency and intensity of Brandie's pain. Shortly after this Brandie did an in-patient treatment at the Johns Hopkins Pain Center for two and a half months. It was our last hope and luckily for us it was the exactly right decision. Now, a year later Brandie does not need to take any medication and has very infrequent bouts of pain that she can easily live through. Her diagnosis was also change from TN to Regional Complex Pain Disorder. Did she have TN, did it change to RCPD? Does she have RCPD now? In the end it doesn't matter, Johns Hopkins changed our life and the results are unimpeachable.

So glad there was a happy ending!

Wow - I was on the seat of my chair!

If my MVD gets old, and my best surgeon is off to retire --- Dr. Lim from Johns Hopkins will be my next stop!

Can you tell us what the treatment was for 2+ months ???

Thanks, and I'm glad you have your wife back and some normalcy - : )

Yes, I didn't understand too which treatment has helped her? Can you answer us? Please, rdifalco!

Thank you!

Ann xx

That's awesome to hear that things are good now!

The treatment would likely be different for each patient, there are so many different types of TN. For her the doctors decided that the TN was no longer the issue but that she now had Regional Complex Pain Disorder probably from the nerve damage done by various treatments over the year. For example, when they did her MVD it was not a typical MVD since they could not find a vessel going over the the nerve so they damaged the nerve to prevent it from sending pain signals. Sometimes as a result of nerve damage the thalamus will interpret the lack of good signal as an emergency situation creating even more pain -- kind of like phantom limb syndrome. So while she was there she underwent extensive exposure therapy, detox for the huge amounts of pain medication she was on, and replaced it nortriptyline -- enough to have 100-125mg in the blood system. She also did mindfulness and biofeedback. She says that the exposure therapy took 90% of her pain away. She stayed on the nortyptaline for maybe a year and is now completely medication free. She sometimes still has pain but nothing like before, maybe once every couple of months she will have 2-3 of days of pain. But it is becoming less frequent as time goes on. But yeah, it's not for everyone. The first thing they will do is detox you off of any narcotics you are on (zero you out -- which will be VERY painful) and well, you can imagine what exposure therapy is like! But for her it worked when nothing else would. By the time she went there she had been handed over to pain clinics with an every increasing dosage of narcotics -- none of which really worked all that well for the pain.

You say it so well. It was so hard to watch my husband suffer. It ate at this stomach and sent him to ER. Since I have gotten relief from my Upper Cervical chiropractor, we are both doing much better. Almost normal, but I still live in fear as my husband does. Thanks for telling your story.