Chronic Pain: It’s Tough on Family and Friends

Chronic Pain: It’s Tough on Family and Friends

Editor’s Note: Lauren McGrath is a 19-year old college student in Australia who submitted this column as part of September as Pain Awareness Month

I have written a few personal blogs since my diagnosis of Endometriosis, Adenomyosis, and PCOS in March of 2014. However these blog posts have been written for viewing of friends and family not the general public. Since then, I have also been diagnosed with Bladder dysfunction from a surgery gone wrong, miscarried my baby and been diagnosed infertile. To say that the journey has been tough is an understatement. After each diagnosis there comes a grieving period. The most recent grieving period I’ve found myself on lately is that of relationships, be that with old friends, family members and partners.

Unless this is a journey you have found yourself on, it is one that can be hard to understand. How do you grieve for something that technically is still there? Well, it’s easy… it isn’t there, at least not in the way that you need or deserve.

For many sufferers of chronic illness, their lives are full on doctors’ appointments, surgeries, medications and a wide range of symptoms that can make the simplest of tasks seem like a battle front.

It’s hard for the family and friends of sufferers to understand the struggle they face on a daily basis. It is almost as though they have gone from being completely relatable to a person to now having no common ground because there’s this big invisible wall between them called chronic illness. A wall that either people choose not to pay attention to, or a wall they are completely oblivious to because it simply cannot make sense to them.

Can you blame them?

What part of getting a new doctor or a surgery date is exciting to someone in perfect health?!

But this wall doesn’t just appear. It is built up over time, piece by piece. It starts with the second guessing, then to the complete denial of others, their lack of knowledge and understanding and their inability to listen. It comes from them judging your treatment options, throwing out healing options, like eating right or just have a baby, have a hysterectomy. The listening goes on until suddenly there is a complete wall built between yourself and that person.

Quite often we are referred to as lazy and exaggerating our circumstances. Often receiving comments like, “but it’s not cancer,” or “people have it worse.” Or in my case – “it’s just period pain! Every woman experiences it, get over it and move on!” Oh if only it was that easy! I would love nothing more than to be able to get up every morning and head to a full time job I love, not need medications, not need surgeries. But that’s not my reality, and that is okay (it has taken years for me to actually believe this!). Chronic illness doesn’t just strip us of our health, and our normal lives, but also of our families, our friends. The people we thought to always be there for us, the people we would always be there for. Whether they were your mentor, your sister, your mother, chronic illness strips us of them. Because they don’t understand, they don’t get it. They don’t get the pain, they don’t get the struggle. All they see is someone who *looks* healthy on the inside but whose body is raging war within.

Follow us on Twitter:

@NatPainReport

@edcoghlan

Authored by: Lauren McGrath

There are 9 comments for this article
  1. G.T.T. at 1:22 pm

    Hi Betsy,
    Here is one ‘list’ of things people can do for their friends/family that are in chronic pain.
    You can try googling different phrases about it & you will get many results.
    The fact that you are asking others in chronic pain really warms my heart. It’s so nice to know that you are willing to ‘go that extra’ for your friend. I bet she appreciates you very much.
    Here is the link. Cheers : )

    http://www.supportforchronicpain.com/fifteen-nice-and-sweet-things-to-say-to-someone-suffering-from-persistent-pain/

  2. Laura at 5:54 pm

    Lauren, you are spot on about the grieving process. I’m 16 years into my chronic pain journey and though I’ve learnt to manage many things, the grieving is one thing that never stops – for the career I’d planned, the person I thought I’d be, the friendships I’ve lost along the way. I don’t know what your own experiences have been, but I think chronic pain at a younger age also makes dealing with the medical profession more difficult. I have a wonderful doctor these days, but my diagnosis (complex regional pain syndrome – which has now spread & is complicated by dystonia and other issues) took the best part of six years because I was 14 when first injured and in the words of my ortho, ‘teenage girls are all hypochondriacs’. When I deteriorated to the point I couldn’t walk, he offered me a psychiatric referral and most of my school friends shunned me as a faker.

    Betsy, it’s often just as hard for us to know when a good or bad day will come – and I too will often make tentative plans, only to break them off at the last moment because my body isn’t cooperating. This has become much for most of my healthy friends. Other than my parents I have perhaps half a dozen friends from “before severe pain” now with whom I still communicate, even those communications are now mostly online; the rest of my friendships are with other pain sufferers and are predominantly Internet-based.

    So if you have the compassion and understanding to support your friend by being on stand-by for those good day plans, not resenting her for those last minute cancellations and just ‘being there’ if she needs you, she’s likely speaking the truth. I realise that it’s hard for people to know what to say sometimes, even that doesn’t matter. Just knowing that we have a friend who cares, who doesn’t doubt us when we need to speak out, is what is important.

  3. Amanda S at 5:19 pm

    Lauren, you are spot on. The grieving is probably the hardest part for me. Everyone is so use to seeing smiling, happy Amanda that now, when I’m having a hard day and bawl, they don’t want to be around me. Keep writing. I find it helps for me at least, I hope it does for you too. Sending lots of gentle hugs and happy thoughts.

  4. Betsy at 4:39 pm

    From your post “Chronic Pain: It’s Tough on Family and Friends” In it, you wrote this about healthy people: “…they don’t understand, they don’t get it. They don’t get the pain, they don’t get the struggle. All they see is someone who *looks* healthy on the inside but whose body is raging war within.”

    But I was reading the article, hoping you would offer solutions. What do you want from someone like me – someone who doesn’t suffer from chronic pain? What can I do?

    I want to be a good friend, but don’t know what it is that you’re looking for… How can I be a good friend to you? How can I help? I have an older friend from church who deals with pain every day. I asked her what I could do. She said that just going out for a meal or a movie on a “good” day is all she wants. And that’s easy. The hard part is never knowing when that “good” day will be.

    But we do get together at least every other week. We make plans, knowing they may need to be broken. We never know until that day whether or not she’ll feel like getting dressed. She says that’s enough. Is it? Is that all we need to do? Be on stand-by, waiting for a good day? I can do that. But is there more? How about with you?

  5. G.T.T. at 7:46 am

    Oh Lauren how much I understand. I too had endometriosis & andenomyosis.
    It is extremely painful. I had four surgeries, three of which were in an 8 month time period. The second one ‘they’ were convinced that all would be well. They were so off the mark. The third surgery was 8 months later with endometriosis all over the place, without going into detail as I’m sure you know. Then the pain began again & that was the worst part of my plight because I had had a complete hysterectomy at that point. I went to so many doctors, many simply didn’t believe that I could possibly have any pain because I had ”nothing left”. Others accused me of just wanting ‘drugs’. Oh so far from the truth. I did my research looking for a new doctor/surgeon. My one statement to many of the doctors I saw was ”I can tell the difference between an adhesion & endo pain”. Some doctors laughed right in my face, some rolled their eyes, it’s remarkable how many are just crude & rude. When I told one doctor that same thing, that I could tell the difference between an adhesion & endo & he replied with ”well of course you can” I knew my search was over. It had been an extremely painful & frustrating three year search including everything you write of. Finally after that fourth surgery & a very long healing process of almost two years I was feeling so much better. I honestly did not think I would ever get better.
    Please google Dr. Harry Reich & read, read, read & watch any videos he may have & share with your doctor[s] if they are open to it. You may be able to contact him, I’m not sure if he is practicing anymore but if you can find the info for him it may lead to someone that worked with him that could possibly look at your medical history & help direct you towards someone worthy of doing surgery on you. I will be sending you the best thoughts for a recovery, as soon as possible.
    To reiterate,
    I too went to many incompetent doctors (as your friend Heather comments here).
    It is very disconcerting to say the least when you find out 3 minutes into an appointment that you know more than the doctor does.
    Someone gave me a very good piece of advice, he said to me “remember, they are running a business, they want to make money. You interview them.”
    Best of luck to you from and Endo & Andeno sister

  6. Kylie Herbert at 12:14 am

    Lauren, you explained this perfectly. You have experienced a lot more alienation from family and friends than most of us do and I’m so happy that you continue to get on with your days, even though you can’t do what you have always wanted to do. You’re a strong woman who deserves all the happiness in the world. Love you xoxo

  7. Heather at 7:21 pm

    Lauren, you write so beautifully and put into words that which is so hard to explain to people verbally. I have to be honest here too, – I have known Lauren for quite a few years. I have known Lauren when she was a reasonably healthy, happy younger teenager. I have seen her battle pain and incompetent doctors at the start. She has picked herself up and carried on despite the pain, grieving and uncertainty. She has grown into a woman that is both beautiful and an inspiration to me.

  8. Deanna Laraby at 10:17 am

    Thank you for sharing your story.
    I agree and understand every word.
    I also have endometreosis and many other chronic pain illnesses. I had surgery and they removed the endometrosis and one Fallopian tube. I found a supplement called Endovan. Please look into online. They have tons of testimonials and I am pain free. It has changed my life.