Coping with Chronic Pain and Illness: Whole Health includes Psychological Health
An interview with Ann Becker Schutte, Ph.D Last year, for the first time, I attended Stanford...
READ MOREOur lives are not the same since polypropylene mesh invaded every inch of our family’s space and time. Mesh-injured women, men, and family members all over the globe are trying to put the pieces of shattered paradigms back together, and it seems to be much more difficult around holidays. We have to admit our new normal if we wish to move towards the hope of a better future.
If your family is anything like mine, mesh entered our lives and made its home as an uninvited member, who shamelessly claimed a spot at our table and now refuses to leave. The mesh monster is a very unwelcome and unexpected addition. He sits at our Christmas tables, arrogantly, offering nothing; but taking everything as he pleases.
The roles and duties of each of us has changed somehow. Expectations and interactions have changed; our well-worn holiday dynamics have changed; and, well, just about everything is different now. I imagine each of us as one puzzle piece, each family member an oddly shaped combination of curved “innys” and trapezoidal “outies” with a picture that is obscured without its other members. Over the years, we’ve each found a way to fit our puzzle piece shape into its right place, and when we all fill our place in the puzzle, the full picture of our family emerges.
But now there’s an aberrant piece. It was never supposed to be in the puzzle box at all. It doesn’t fit in with any other piece. It creates voids, confusion, a feeling like we must be missing something. Every person is reacting to this abhorrent piece differently. Some are trying to shove it under the table, but it’s too strong and keeps rearing its ugly head. Some are going after it with the turkey carving knife, only to realize that when slain, two more mesh monsters emerge. Some of us say, “What mesh monster?” but we something is different and can’t be made right, even if we believe ignoring it will make it leave. But, for all these valiant efforts, he’s not leaving this Holiday Season. For many of us, this is yet another year following two, five or ten years just like it, this uninvited guest now a resident.
The mesh monster can create destruction and chaos everywhere. He takes mom to the back bedroom and screams pain to her; whispers lies, haunting words of unworthiness. He takes Dad in another room, and mesh monster slams the door behind him and yells, “You’re a failure of a man! You can’t solve mom, save mom, salve mom, or even see mom. You are worthless!”
Mom and Dad may try to hide their pain, because, after all, it’s Christmas! But mesh monster is relentless. He doesn’t care what day of the year it is. Extended family members try to make their puzzle pieces fit too, and predictably, they cannot force a square peg into a round hole.
My point is: I get it. My family gets it. As far as I can see, we all go through this fight with mesh monster. Based on my experiences, I’d like to offer you and your family 12 Ways To Get Through the Holidays. I hope the practice of these easier-said-than-done acts can help all of us at least find times when, joined together as a solid force, we can occasionally put mesh monster in his place, and we can get better and better at it. As you read through the list, begin forgiving yourself and others now. None of us will be perfect. We will all make mistakes, but the triumph is that we try.
12. BE HONEST – Mom or Dad; if you are in pain, tell us. Maybe you’ll give us the opportunity to be understanding and show compassion, two things that are even better than wrapped gifts.
11. SET EXPECTATIONS – As a mesh injured woman or man, think about age-appropriate ways to share your physical, emotional and mental limitations with kids, grandkids, other family members & friends. Make a calendar, and set aside time to have conversations early with extended family who may not know the depths of your injury.
10. CONSIDER A NEW TRADITION THIS YEAR or decide to KEEP IT SIMPLE – Instead of trying to accomplish a million errands; cook every loved one’s favorite dish; wrap every gift, decorate the tree perfectly, etc. etc. etc., think of some ways to make the holiday LESS STRESSFUL for yourself. Your lack of your stress will likely change the stress level of all. Consider buying a tree that is already decorated. Consider getting a pre-made meal or ask friends or church members to make two pecan pies this year, one for you too.
9. KEEP FOCUSED ON “I CAN”– Your family members are likely going to take emotional cues from you, since they will naturally be concerned about your comfort and pain level. If your pain is manageable, interact; but don’t overdo it. Think about what you CAN do and focus on that.
8. SEPARATE YOUR “YOU” FROM “THE MESH” – I know many of you may feel this suggestion is like asking a camel to fit through the eye of a needle, but as much as it feels like the mesh has taken your “YOU,” it hasn’t. We still see the “you” and we want to know what we CAN DO with you. Especially for little ones, it’s much harder to understand how to “not do” or “not be” something than it is to understand how “to do” something, or how “to be” some other way. Redirect us towards your “YOU” and away from the mesh. Redirect kids and grandkids towards activities that YOU CAN DO WITH THEM. And when you can’t anymore, take a break.
7. TAKE BREAKS EARLY AND OFTEN – The holidays are stressful for every one, even those of us, not in chronic pain. Be gentle with yourself, and take breaks frequently from activities. Communicate to us that you need time to yourself and are setting a boundary and that you’d like to be alone so you can rest, recover, whatever you need to do to recharge.
6. ASK FOR HELP – Believe it or not, many of us would love to know the small and big ways we can be of service to you. We feel helpless most of the time. Please ask us for help. We feel useful, and we feel closer to you when you do.
5. TRY NOT TO MAKE ASSUMPTIONS – Just because you ask for and/or need help doesn’t mean we think you are “old,” “incapable,” “lazy,” etc. We love you. If we are delivering body language that says otherwise, tell us. Ask us how we feel. Tell us how you feel. Undelivered communication is a fallacy. It will usually be delivered in some unexpected and far more hurtful way. Perhaps, an outburst of anger over something seemingly small takes everyone by surprise, or a roll of the eyes becomes habit and prevents healthy communication, or what about when you or a loved one consistently displays conflicting communications (i.e. smiling while saying something hurtful; or acting helpful while showing resentful body language). Whether from the injured person or a family member, undelivered communication can be some of the most damaging moments.
4. LIMIT YOUR EXPOSURE TO TOXIC FAMILY MEMBERS – This may even mean spending Christmas or Hanukkah with just your immediate family, or only your spouse/significant other. If there is a family member who has historically been unsupportive, critical, uncompassionate, unkind, unbelieving or abusive in any way (including psychological, emotional and verbal abuse), don’t spend your time with that person. If you don’t have a choice because plans have already been made or there are other factors outside your control, limit your physical and emotional proximity to them. Some family members can sabotage your efforts to succeed in recovering your quality of life bit by bit. Identify who those people are, and write a list for yourself about how you will limit your time with them. Tell another family member you trust to help you keep boundaries between yourself and those who aren’t supportive of your efforts to heal.
3. SAY PLEASE AND THANK YOU – This one may sound harsh or condemning. It’s not meant to be. For those of us who are or have been in the role of primary care giver, it helps us tremendously to know that we are still valued by you. That you still know we care enough to make small sacrifices in order to do things to help you. We want to know when we get it right and when we do something loving and valuable.
2. REMEMBER, WE DON’T UNDERSTAND – If we have not been injured in the way you have, we can’t understand fully what you go through on a daily basis. Please be patient with us as we struggle to understand and accept the new realities that you are so familiar with, but which may be difficult for us to accept.
1. FORGIVE EARLY AND OFTEN – Formally ask others to do the same. As we all struggle to find that new shape, the puzzle piece we are BECOMING, we will get it wrong sometimes, maybe even a lot of the time at first. Please allow us room to fail, and without condemning us, be patient, and forgive us. Gently correct us to show us how to be more helpful or less insensitive with our actions or words.