A Gift You Give to Yourself!
by Leigh Reynolds, FSHD Society
Celebrating the holidays can be emotionally draining for many, but for those with a chronic condition like FSH muscular dystrophy it can be even more so. Add in a year like we’ve had – global pandemic, natural disasters, politics – and it is downright exhausting before we even start.
The following suggestions are offered to help those affected by FSHD – both patients and caregivers – set some healthy boundaries and set our focus on what matters most.
Remember the Meaning
Determine to keep your focus on the true meaning of the holiday you celebrate. The hectic pace brought on by the commercialization of the holidays can intensify the pressure to make the holidays special by buying “this” or getting “that”. But your care for someone is not quantified by the price tag on a gift.
Those impacted by FSHD have enough added stress in their lives without adding unnecessary financial pressures. Moving our emphasis away from “having” toward “being” can involve some introspection and dialogue with loved ones, but it can be so worth it. Ask your family and yourself:
- What is the true meaning of the holiday we celebrate?
- What is the most practical and meaningful way we can honor this meaning?
- What traditions are most meaningful to us?
- What typical activities could we let go of without feeling a real sense of loss?
Challenge Traditions – Create New Ones
Have some of your holiday traditions become more a chore than a cherished moment? For some, all the decorations, cooking, holiday cards, and gift exchanges can be overwhelming. Once you have decided what means the most to you, you can sift through these “to dos” and make some intentional decisions on what to keep and what not to do.
One of the best gifts you can give yourself and your family may be to start a new tradition. Assess your financial situation, gauge your physical and emotional health. Decide what is realistic, meaningful, and enjoyable, then let go of the rest. Make a conscious choice to let go of any guilt you may feel for not celebrating “right.” Taking care of yourself, setting appropriate boundaries, and focusing on what is most meaningful to you and your family is what’s right.
Put Yourself at the Top of Your Holiday Gift List
It has been said that learning to love yourself is the greatest gift of all, yet we tend to deem ourselves “selfish” when we emphasize self-care. So often, in our eagerness to please our loved ones, we neglect ourselves. Indeed, it does feel good to give to others and it can boost feelings of self-esteem and self-worth when we express ourselves through extravagant presents and gifts of service, but when these ‘gifts’ put us a financial bind, deplete our health, or exhaust our joy then the cost is too high.
Putting yourself at the top of your holiday gift list can simply mean focusing on your highest good. Challenge feelings of guilt or inadequacy, choosing instead to validate your intrinsic worth. Give yourself the gift of peace of mind. Doing something for yourself can be as simple as getting more sleep, listening to music that puts a smile on your face, pick your signature color and wear it every day, leave the good china in the cabinet and opt for paper plates so you can spend more time with loved ones. You decide what small thing can be a big gift for yourself, then accept it with joy!
Allow Yourself to Receive
Allow yourself to receive graciously, gratefully, and unconditionally. Leave “oh, you shouldn’t have” out of your vocabulary this season. It is damaging to your self-esteem (it says “I am not worth it”) and it can take the joy away from the giver.
It can be hard to receive when you are living with a chronic condition, like FSHD. You may be plagued with feeling as though you don’t have enough to give back or that you take too much already. This is toxic thinking. The giver chose you because they care and giving brings them joy; allow yourself to feel the love their gift represents and leave it at that.
This point can be extremely important for caregivers that are so used to giving of themselves. But caregivers need to hear the healing message that they are worthy of receiving and that they are loved and appreciated, not just for what they do, but for who they are. It is exceedingly important that caregivers allow themselves to receive from those they support and others.
Set Boundaries & Stick to Them
Often, the holidays come with a sense of obligation that forces us to spend time with people who make us uncomfortable. But the “Season of Giving” doesn’t mean you have to give up your own space, leading you to be worn out emotionally and physically.
Evaluate your feelings about spending time with close family and friends. Ultimately, you will have to make a choice: are you willing to risk offending someone for the sake of self-preservation or the maintenance of boundaries? If your personal health concerns or comfort level mean you want to avoid gatherings all together, don’t feel guilty for gracefully bowing out.
There are ways to connect even while socially distancing.
- Set up a Zoom call that includes time for interactive activities or games
- Record a video greeting to send to loved ones
- Write and mail good old-fashioned letters to those you care about
- Forgo the text and set aside some time to talk to someone on the phone
And remember, we can’t change other people. Take a little time to think about your own attitudes or perceptions. Is there a different way you can approach a situation or communicate an issue that will help the other person to really hear you?
Look Forward to What’s Next
In a typical year, the holiday season can be a mixed bag of relief, fatigue, joy, and depression. In this year, with pandemic restrictions and added stressors, you may be feeling worn out before you even begin. We’ve all lost so much, it can be hard to imagine scaling back the holidays to give up even more.
But where we are now is not where we always will be.
Find something to look forward to. Think about a goal you can set. Dream a dream. Determine ways you can continue to give to yourself year-round. Keep your plans concrete, practical, flexible, and attainable. Then remember to celebrate when they come to pass. For this, too, shall pass and the sun will rise on a beautiful new day!