Tuesday, June 27, 2023
Your support team doesn't end or even begin with the rheumatologist! It starts with your family and friends!
I remember as a kid having family meetings. They didn't happen often but I remember how effective they were. They usually occurred when big changes were about to happen like my sister, Lizzy, being born or moving to a new town.
I remember feeling important and valued. Even though I didn't have much of a choice as a child, I was in an environment where I could voice my opinion, express my fears or ask a question. I felt empowered, like I had some control over my life. These meetings built trust and gave me self-confidence. I felt like my words had weight in the family unit and like I was part of a team.
I have used them in my life as an adult too. One of the most impactful ways I've utilized family meetings is for solutions to some of the challenges I have faced as a result of living with rheumatoid arthritis, like having a quasi-emergent total hip replacement at the same time as replacing all the leaking windows in the house (which I felt was the real emergency!)
Getting your family and friends on board with your RA-needs will change the entire atmosphere of your daily life. Wouldn't it be nice to wake up with a clear plan of attack for the day, feeling empowered and part of a tribe... and go to bed with energy reserves still available? Can you feel the stress melt away knowing the people around you know how to help and you know how to ask?
One of the best ways to accomplish this is with a meeting, either one-on-one or in a group setting. There are a few preparatory steps that will help make your meeting a success.
The first step is to identify your needs and start communicating them. If you cannot properly communicate what your expectations of your family are, it can cause frustration, hurt and anger from both sides. Family members that grew up "the same as you" may not actually hold the same values in the same priority level as you. It is vital to have an open conversation about their expectations as well.
But first, take time to figure out clearly what your needs are. This may take a few days, or longer, to hone-in on what is important to support you and your disease management better. Spend time analyzing your needs by looking at all aspects of your life: your daily hygiene, house chores, family needs, extracurricular activities and any other tasks that may seem draining or difficult.
Write a list and rate their difficulty to you out of 5- or 10-point system. Be honest with yourself. Search for "Spoon Theory" on the internet. (One of the bonuses in my "Become the Boss of Your Body" course includes a free RA version that I created.)
If you feel guilt or judgement in this assignment, take a break from the examination. Consider focusing on your strengths or do something that brings you into a positive, confident mindset. This could be a favorite hobby, meditation, or reading affirmations/bible verses. As I stated earlier, this analysis could take a while and it is important to get as accurate to your needs as you can for the place you are in now. (They will likely change as your disease changes.)
To thy own self be true! It is mondo, super-duper important to know yourself and what you accept in your life to be safe, nurturing and trusting. What are your boundaries? You may be allowing people to overstep what you believe is love and trust and it can cause confusion. A Christian-based book that has been phenomenal to read (AKA listen to on Audible) is "Boundaries, Updated and Expanded Edition" by John Townsend. If you aren't very religious this is still a very beneficial book to have in your Wyld Chyld Living arsenal.
Next, write down how you would like the selected situations or tasks to improve. For example, you may say that you would like to have assurance that the floor is not cluttered with toys or your partner's socks in your direct path to the bathroom. Your solution may be that there is a clean-up done within a specific, reasonable time or offer to buy an organizational container for the "obstacles" to go in. You may want to research some potential solutions.
It is alright if you do not have a solution. Your family or friends may provide some options they feel comfortable with when you address this in the meeting with them. Leave a space on your list to write down their perspective.
When you feel confident with your list and potential solutions, set your meeting objectives/goals. Do not pick more than three points to talk through as this can get emotionally tiring and good mental energy will not resonate in your conference.
Select a meeting date and check with the parties involved for compatibility. Let your meeting guest(s) know what topic(s) you are looking to discuss. With a date scheduled and topics decided, express the seriousness of this meeting for you.
Devise some rules of engagement and tell your group ahead of time. For instance, if there are other concerns to be discussed it will have to be worked through at another time; this goes for you too. You can look up ways of how to "fight fair" online. There are also some great books to check out from the library. I listened to the book, "Nonviolent Communication" by Marshall Rosenberg. This book sounds brutal, but it is great for encounters with people who refuse to budge on what they want as well as interacting with fiery or excitable family members (such as Italians, Portuguese, Puerto Ricans and anyone from NY or NJ).
Advise your group/person that the meeting is not meant to be confrontational and therefore you are asking that if they need to vent, do it to someone else beforehand.
Productive energy is an important characteristic for solutions to develop, venting/ranting is not efficient during a meeting.
You are the key to how your meeting evolves.
A day before, gently remind your meeting members of the agreed upon date and time. You also need to stick to the meeting date to show its importance for you.
Prepare your mental state ahead of time. This may look like talking to a counselor or trusted friend (who is not involved), praying, meditating or journaling.
Consider opening the meeting with a group prayer or a positive verse about family, connection or trust.
If your energy is negative, rageful or hyper-focused on what you need to say, you will not accomplish your goal and you may leave feeling defeated and hurt. The meeting must start and continue to be about openness, care and seeking resolution.
Even though the gathering is to address your needs, remember there may be many perspectives involved that you will do well to be mindful of. People are human and it may take time to get the solutions working congruently within everyone's life. No one is perfect so if you start to put them on trial with accusations of the things they did wrong or mention situations that they "should" have done better, your meeting or assistance in execution of the resolutions will fail.
In any scenario, be patient. Be compassionate. Everyone has their own baggage. Don't ask them to (figuratively) hold your bag of issues just like you don't want to hold theirs. "Judgement Detox" by Gabrielle Berstein is helpful. I like this one as an audio book because she has very useful, guided meditations in it.
As the meeting progresses, ensure everyone understands each other.
Repeat back some of the points they are making so they feel understood. Ask the same of them. You may soon realize some of the fault lies with you and there are concessions to be made. Compromises may have already been given from other parties. If you discover this, say thank you and recognize this as an action of love. ("The Five Love Languages" by Gary Champman is a hard copy, must-read. In fact, own this book.)
Gratitude can be difficult to acknowledge if you are seeking validation from years of tribulations in one session.
Be open to what you may be asked to do. There is a chance you aren't owning your shh..stuff.
If the meeting gets emotional or heated, step away for a moment and repeat the goal of the meeting. Thank them for being willing to work on a solution to your needs, and therefore the needs of the relationship.
Know, they are validating you just by showing up and being willing to share their frustrations. If emotions become out-of-hand set a new time to regroup.
Summarize before disbanding; don't end it without discussing what was accomplished (even if it is just learning people's concerns).
Write up (or ask someone to) a contract agreement for all parties to sign. I know this sounds silly or over-the-top but it is empowering and a great reminder of the agreements made. (Emotions tend to make you forget details).
Place in a highly visible spot in the house. If this is a friend or someone who lives elsewhere, make copies for them.
Determine a second, follow-up meeting date. Do this even if you think it is redundant or useless. This holds people accountable and allots an opportunity for adjustments to the agreement.
This will all be worth it. You'll feel more empowered to ask for help as you see the people in your life willing to hear you, validate your needs and modify as needed. You may feel more loved when you see what tasks your friends help with. You’ll gain a deeper connection as you show love through gratitude and listening and learn to trust each other in new ways. Good luck!
If this is still new and scary for you or you are looking for more guidance, just because, schedule a strategic call with someone (me!) who can help you gain confidence and direction in your chronic illness management journey!