Helping Others Understand Your Chronic Illness at the Holidays

Woman holding cup of coffeeFor many people, the holidays can be stressful. Between parties, financial expenses, travel, and family time, anyone can become physically and mentally exhausted. If you’re dealing with chronic illness in addition to the hubbub of the holidays, you’re even more likely to get worn out. And if your chronic illness is an “invisible” illness—like arthritis, fibromyalgia, or chronic fatigue—it’s more likely that you are misunderstood when you decline an invitation or leave a get-together early.

We’ve talked before about “me time” and the benefits of saying “no.” This can be very useful in helping you maintain your health during the holidays. But when alone time becomes more limited during the hustle and bustle, how can you manage your illness AND enjoy the holidays?

What if your friends and family had a better understanding of your illness? Would they be more accommodating and more accepting? Would they be more understanding when you leave a party early or decline attending altogether? Is it possible they might help out more? Our hope is yes—but how do you accomplish that?

Try these three tips to help your loved ones better understand your needs during the holidays:

  1. Give the gift of education. Tell those you will interact with about your condition. Talk openly about your specific symptoms and struggles. Hand out brochures or medical articles about your condition, and answer any questions they may have. Education helps reduce stigma and increases understanding and empathy.
  2. Make a list and check it twice. Compose a list of tasks or chores that others can help you with (think shopping, gift wrapping, cooking/baking, card mailing, etc.). Don’t be afraid to ask for help or to delegate some of your responsibilities. This will free up time for you and help others feel useful.
  3. Prep for the party. Before the party or gathering, talk to the host or hostess and let him or her know how you’re feeling that day. If it’s a good day, then great—enjoy the party! If it happens to be a day with more pain, symptoms, or fatigue, let the host or hostess know that you may not make it or that you may need to leave early. Talking in advance can keep possible hard feelings at bay.

Let’s face it: Even though we want others to be accepting and understanding of us, there will always be some people in our lives who just don’t get it. Surround yourself with empathic, validating, and compassionate people. You will feel more at ease and able to enjoy the festivities when those around you are informed and supportive.

© Copyright 2014 GoodTherapy.org. All rights reserved. Permission to publish granted by Andrea M. Risi, LPC, therapist in Denver, Colorado

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Candi

    Candi

    December 23rd, 2014 at 11:01 AM

    It almost feels impossible at times to try to explain what I am feeling when there are really no outer symptoms of my illness other than the fact that I am easily worn out and in pain much of the time. It is hard to try to get other people to understand that I might not be able to keep the same pace that they do because of my illness, and while I want them to understand, I also want them to be a little more sympathetic to what I have to deal with. There are times that I admit that I don’t feel like anyone really believes that the pain that I feel is real.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    December 23rd, 2014 at 1:05 PM

    “There are times that I admit that I don’t feel like anyone really believes that the pain that I feel is real.”

    Candi – Think many people with “invisible” illness can relate to your statement. Educating and talking about your condition with others can help. Finding supportive, people who understand your feelings and symptoms can also be validating.

  • ariel

    ariel

    December 23rd, 2014 at 2:07 PM

    The gift of education is the best gift that you can give to someone who is important in your life and that you would really love to have understand what you are living with. Without the proper understanding how can they ever truly accept that what you deal with is substantial and real?

  • Deb

    Deb

    December 23rd, 2014 at 6:39 PM

    My son and I are both disabled from arthritis and multiple back hip and knee surgeries and even after 8 years my family still doesn’t get it . Sometimes you just can’t educate those that don’t want to either understand you or don’t believe you . I have had to move on from them and surround myself with people who accept and understand disability and chronic illness .

  • jenna

    jenna

    December 23rd, 2014 at 8:12 PM

    @ariel:I agree with you.it is surprising how people mostly reciprocate and understand you (well at least on most occasions) when you speak out.

    keeping mum about the situation and expecting them to understand is not going to help.a lot of situations that I thought were overwhelming and when I thought nobody got my point of view,speaking out and telling the others involved has helped.it may for you readers too!

  • linda

    linda

    December 24th, 2014 at 7:00 AM

    When I was a young woman prior to RA and fibromyalgia I was one of those unbelievers. There were two women in my husband’s family who had a number of invisible diseases– carpal tunnel syndrome fibromyalgia, manic depression, Epstein Barr virus… I’m now embarrassed to say that I was quite guilty in assuming they were lying about pain and fatigue. Now that I have RA and FMS, I know how wrong I was. I’m an educated person with an adcanced degree and I didnt take the time to learn more; I just assumed they were lazy and full of excuses. Now I know that I can’t expect any different of others. Even at my own diagnosis, upon hearing “RA,” my husband hugged me and said he was sorry. I wondered why he was overreacting to “just arthritis!” How can I expect others to get it??

  • Phil

    Phil

    December 24th, 2014 at 8:47 AM

    An invisible handicap turns every event into a social incident–for the handicapped. How we handle that event can “share” the incident so that everyone suffers along with us. I’ve learned to be careful about how I escalate the incident. That is, my default position is to cope in a way that essentially hides my handicap or illness (in my case , cancer and partial blindness). That means “preparation”, or as my blind-rehab professionals call it, “adaptive measures”. The first level of escalation is exactly what this article points out: awareness (an aspect of education). A white cane helps in some settings, but it also “over-escalates” in other settings. Too much awareness means that people avoid you because they don’t know what to do. So we’re back to hiding the handicap as a coping mechanism. But sooner or later all one’s friends will be very aware of the illness or handicap–and will be distracted from “real” conversation and focus too often on the handicap. And this can be so frustrating that it triggers anger or even rage. Handicapped or sick people want to be normal, healthy and in control of themselves. I can’t drive, can’t see who is in the room, eat the refreshments (an aspect of my anti-cancer therapy), and generally have limited power to manage my own life. Not being able to converse with friends about real life and the world beyond my handicaps can be just another blow to my self-esteem.

    Which returns me to the concept of “hiding” my handicaps and illnesses. By all means I totally agree with the “education” and sharing one’s feelings point in this article. But it ought to be handled in ways that don’t spoil the few social events that are manageable. And the second point of this article, asking for help, is a great way to spread awareness in a way that others “enjoy”. I’ve learned that people do enjoy being helpful; it bolsters their own self-esteem. At least it does until one becomes a “high maintenance” friend.

  • Mike

    Mike

    December 24th, 2014 at 4:56 PM

    I have severe fibromyalgia pain and high chronic fatigue (not as bad as some with CFS) and my family really does seem to lack sympathy (not just at the holidays). Thanks for the tip about education… I may just try that. FMS doesn’t make me walk or move stiffly so I don’t show the pain clearly, and also I try to maintain a cheerful demeanor so the high level of distress and despair I live with doesn’t show that much. I tried to bring this up with my parents in family therapy and they had no sympathetic reaction at all.

  • Mackenzie

    Mackenzie

    December 25th, 2014 at 4:11 AM

    Is there anyone like me who sort of feels like it is not my job to have other people understand but rather that the people who already know me and love me will automatically be sympathetic to my pain.

    I am not sure wy it would or should be up to me to explain myself or to try to convince them that there is something physically wrong with me and the reason why I feel this pain.

    If they love me then they will automatically understand that I am not stretching the truth and that there is something going on that causes this, that it is not just in my head.

  • Nik

    Nik

    December 26th, 2014 at 7:09 AM

    What kind of family is actually going to try to make you feel bad because you are sick?!

  • Mike

    Mike

    December 26th, 2014 at 11:44 PM

    Nik, lots of real kinds of families, unfortunately. The problem happens when your family experiences your illness as an unwanted intrusion. They can then act callous, use subtle put-downs, etc. It’s true that it seems almost absurd to attack a sick person, so I believe that if such a family member could reflect with consciousness on what they are doing, they would stop it. But consciousness is a rare quality–it’s more common for people to act out their issues without reflection. When the sick person’s pain becomes a very unwelcome intrusion, other family members can get downright angry at them (although again not necessarily with consciousness).

  • Gwen T

    Gwen T

    December 27th, 2014 at 9:57 AM

    I refuse to let my illness bring down the mood
    If I don’t feel up to something then rather than bringing everyone else down I would just prefer to stay home

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    December 27th, 2014 at 10:56 AM

    You all have made some important observations! Phil’s suggestions of sharing information about your illness can be on an as-needed basis. Some people share their story with everyone, while others share it with nobody; most people fall somewhere in between.

    As we pointed out, unfortunately there will always be people who don’t want to take the time to understand your situation. If you choose to keep those people in your life, finding ways to assertively communicate with them can help you maintain your own mental health.

  • Kylee

    Kylee

    December 28th, 2014 at 8:25 AM

    those who wish to know more and understand more, they will
    those who wish to be snarky and think what they believe, they will continue to do that as well
    not much that you can do to change the minds and open the hearts of those who are like that until they are ready to do it on their own

  • joe

    joe

    December 29th, 2014 at 4:18 AM

    My sister has fibromyalgia and it took a while for us all to understand that now that there was this diagnosis there were certain things that we could no longer expect her to reasonable be able to do. I am sure that one brother of mine was not happy with that because he felt like she wasn’t pulling her weight with helping with mom and dad. But then he saw how much even the smallest things would exhaust her and I think that once he was able to see this for himself he became a whole lot more understanding than he once was. It’s bad that we sometimes can’t take someone for their word, that we have to actually witness it to believe it.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    December 29th, 2014 at 2:04 PM

    @Kylee: this is a difficult thing to accept, but it also open the door for us to surround ourselves with those people who are more understanding.

  • Andrea M. Risi, LPC

    Andrea M. Risi, LPC

    December 29th, 2014 at 2:07 PM

    @joe: Thank you for sharing your experience from the family members’ side. I’m sure your sister appreciates your willingness to learn about Fibro. We need more understanding people like you!

  • D. H.

    D. H.

    November 25th, 2015 at 9:09 PM

    My mother still calls me occasionally and says, “What?, you’re still sick? haven’t you gotten better by now?” I’ve stopped answering the phone when she calls. I now surround myself with my own chosen family and friends who are very supportive. The holidays are still difficult for me, but I know that I have allies and helpers, I’m very grateful.

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