I want to start by saying that I profoundly value the friendships that I have, and I always will. I have always consciously chosen close friends that understand and accept me, support me, or challenge me in healthy ways- and they are a solid group of people.
Since I have had to give up many major close relationships throughout my life for the benefit of mental and physical health and safety, I have always promised myself to keep the friends and family around that do really align with the life I want to have. So if you are a family member of mine that I still connect with after all of these years and experiences, I love you dearly and thank you for moving through life with me. If you are one of my friends, you are basically my family and the previous sentence is for you too.
There is never unappreciation for the love and support you have been able to give me (and my family) through this journey, this post is just to help other people understand where their support could be needed and given while someone they know is dealing with mold illness and all it entails.
Throughout this journey, there have been a lot of times where I felt abandoned and misunderstood. That place was very dark and lonely, and I know it didn't happen on purpose so it is okay by me now. But back then, I did wish an awful lot for more connection and support. I don't want others to feel that way.
I want to share a list of things that people CAN do to support us.
I want this list to exist so that there is a place people can look when they WANT to show up for us, but they don't know what to offer, or how.
WAYS YOU CAN HELP SUPPORT A FAMILY MEMBER OR FRIEND WITH MOLD ILLNESS:
Check in on them
Ask us how we are doing only if you want to know, and are ready for the possibility that we aren't okay. While well intentioned, try not to comment on our physical appearance by telling us "we look better" or "seem healthier", as often chronic illness patients have invisible illness symptoms and our looks do not match our insides. If we are currently not doing well, please be ready to listen to us and try to cultivate empathy. You don't have to offer solutions, or completely understand what we are going through- being heard and feeling seen are important emotional supports for mold illness patients.
Offer childcare or sleepovers for kids to give the parents a break
This may be helpful for those parents that are in treatment/recovery, We use a ton of our time and energy everyday taking care of our kids, and are also supposed to be doing work on our own recovery at the same time, it is quite hard. If you baby-sat for a couple hours, or took kids for an overnight, you could give the adult time to focus on their own well-being physically, & emotionally. This actually helps their recovery.
Offer to pick up some groceries
This may involve dietary restrictions, so ask for specific brand names of items, or ask for pictures of items they need. You could also have them virtually shop for groceries and you could pay and then pick up the items form the store and drop them off. Or use insta-cart if you aren't able to drive.
Bake a family-sized freezer meal & drop off
Again this may need to comply with dietary needs, but if you ask them to send you a recipe they can eat, that's an easy solution. This is so helpful for those in the healing journey that have extreme fatigue, or are cooking every single one of their meals every day. Breaks from cooking are amazing.
Send us some hilarious pictures or memes or videos
It might seem like a really small and meaningless gesture to you, but throughout the day those tiny humorous pick me ups can take us out of a negative line of thinking, or can remind us that someone is thinking about us. They can also give us a small bit of light while we are experiencing a painful symptom or fatigue. Distraction is wonderful when you are in that moment. Laughter is always a wonderful thing to give.
Write/send a heartfelt letter/card
Similarly to the last idea, this lets us know that someone is thinking about us and also helps us connect socially and emotionally. Those connections are incredibly important to our well-being and help our mindset throughout recovery. I still look back at the cards people have given me during my illness when I need support and I re-read them. I physically slept with them next to me on many of my darkest days.)
Give some cozy clothing/slippers/blankets
Ask if the person wants or needs these items, most times they will appreciate the gesture and be very grateful. We have a lot of therapies/treatments and appointments that are lengthy in time and we often get chilly during them. We also may be spending a lot of time in bed or less mobile depending on the severity of our symptoms. If we have children with these illnesses, the same applies to them, and a new cuddle buddy for them and a book may be a cozy way to show your love and support to a child.
Please do not show up with donated furniture or other items for their home after it has been remediated.
This may not be one that everyone understands, but mold ill people need to be very careful and choosy about what they bring into their homes after being ill from mold and going through remediation. As mold ill people being to recover, they usually become way more sensitive to their environment and reactive to it- (MCS, MCAS, or Mold Sensitive). This can be very physically painful and also exacerbate many internal symptoms. Mold ill people usually need to throw out a good amount of furniture or items from their home throughout the remediation process and end up needing to replace them.
If you have a used item you'd like to donate toward their cause, ask first. Some people are so sensitive that they prefer to only buy new items. Some people can tolerate some items re-used if they properly wash them following a specific protocol first and then also test for reactions before they bring items into their home.
Best rule of thumb when looking to donate items, 1) ask if they want them 2) allow them time to properly clean them outside of their home 3) let them test for reactions.
Please don't be upset if they refuse your offer, it is a matter of health and safety.
Show interest in our journey
You can do this by actively asking about it, educating yourself about it, or physically coming to help if asked to. You can do this more passively by liking, sharing, or commenting on anything we share online or in texts about it. You can stick up for us when someone else tries to deny or downplay our illness, and be an advocate for mold illness recognition.
Avoid toxic positivity
While we love a cheerleader, there is a fine line between support and toxic positivity. Responding to our thoughts and feelings with toxic positivity can cause minimization, invalidation, and denial of our experiences.
If we don't allow for the discussion and validation of negative aspects of our journey, a dark state of denial and repressed emotions can occur. This creates stress, and stress is terrible those with chronic illness. Please be positive, but accept and validate our negative feelings also.
Let go of expectations
Because you may have known us for a while, you may expect us to behave or react or be a certain way. Illness changes that. Please accept that we are much akin to a pupae in a chrysalis, we are moving through something that will require an immense amount of changing. We are not going to come out of it the same as we once were. We may need more breaks or rests. We may end up physically altered in look or ability. We may react to some of our old favorite things and can no longer enjoy them with you. We may need to cancel plans; try not to take it personally, it isn't about you. We are moving through this the best that we are able to, and our abilities shift an awful lot.
Please don't invite us to places with mold or known water damage
This one seems obvious in reading it now, but I can't tell you how many times I have had to consider this one in regards to making plans with people and not having them realize it was actually a thing I need to consider. If it is unavoidable, tell your mold ill person and ask if they can bring binders, or supplemental supports to help them while they are there.
Be mindful of their budgetary needs
Living with a chronic illness is crazy expensive. Actually bankrupting. This can't be understated. If your family member or friend is fundraising for treatment or recovery, think about supporting them if it is within your means to. even if it is $20, it will still help them get what they need.
If you want to plan an event, or dinner out, or a trip together- consider adding in some cheaper options to consider in your list. This way if someone doesn't have the funds at the moment, they don't feel ashamed & decline the plans altogether, rather they can still find a way to participate with you that is just more affordable. they want to have fun with you and be in your company of course, paying for health needs just comes first and sometimes doesn't leave much left over.
Ask directly, "What do you need? or "What can I do for you?"
If you aren't sure what else to do, start there.
We appreciate your love and support more than you will ever know, and more than we will ever be able to accurately convey to you.
If you are looking for ways to help support us, I hope these ideas give you a head start.
(Image credit to myself, created on Canva)