ADHD, hoarding, illness

Overcoming Hoarding

Many people with mental health conditions, ADHD, and chronic illness deal with hoarding tendencies. Our relationship with stuff can be incredibly complicated and overwhelming.

This is the story of my family and my struggle with hoarding.

Do you know the difference between hoarding and collecting? A collection that is not actually valuable, useful, organized, and accessible is likely hoarding because if you can’t manage your things, you will easily fall into hoarding.


Now, before I get started, let me apologize to my family for any of the details that I may have gotten wrong. My intent in writing this post is to help other people who are struggling with hoarding. My writing is only as accurate as my memory. Since many of the things described in this post happened when I was a child or even before I was born, I am doing my best to accurately convey them to the best of my recollection. Please forgive me if I am less than totally accurate about some of the details. Please know that I am not disparaging anyone’s character in this post, but rather giving commentary on the effects of mental and physical illnesses.


This is the story of four Sarahs. Four girls, all named Sarah, spanning nearly a century.

This is the story of how hoarding has affected our lives and the story of my pursuit to break the generational hold that stuff –possessions– has on our lives.

Sarah Number One

My great grandmother’s name was Sarah. I never had the pleasure of knowing my great-grandmother as she died before I was born. I know that she was a very caring, loving lady who had only one child: my grandmother, also named Sarah. While my grandmother described my great grandmother as loving, she also described her as controlling and obsessive. If she were alive today, I have no doubt that she would be diagnosed with Obsessive Compulsive Disorder. She required everything to be meticulously clean all the time. She held my grandmother –who was not naturally meticulous– to her standard. My grandmother was not allowed to save treasures or things that were important to her. Everything always had to be perfect in their house –and if it was not, then my grandmother was not even allowed to have friends over. Once, my great grandmother decided that her curtains were not right, therefore my grandmother was not allowed to have company. Listening to my grandmother describe her relationship with her mother, it was quite obvious that –while she loved her mother very much– she did not agree with how her mother chose to interact. Her mother put a huge emphasis on things, on perfection, and on tidiness at the expense of all else. This attitude would greatly influence her daughter.

Sarah Number Two and Three

My grandmother is Sarah number two. She grew up, got married, and had children. From what I have heard, she didn’t really start having problems with hoarding until after her fourth pregnancy. There were complications, she was hospitalized, and the baby –named Sarah Jane– died. Sarah Jane is Sarah number three. Sarah Jane was one of eight babies my grandmother lost. My grandmother’s health –physical and mental (which often go hand-in-hand)– declined from there. From what I understand, it was sometime around then the time of Sarah Jane’s death that my grandmother started hoarding. My father describes a memory of being so happy once when the living room was cleaned out that he has his siblings danced around happily because there was finally enough room to play.

Grandma probably had many of the same conditions that I have. Unfortunately for her, in the 1950s and 1960s, doctors were less likely to diagnose and treat conditions in women, and many of the conditions I have were unknown –undiagnosable– at the time. If I had to guess I would diagnose her with a thyroid problem, estrogen dominance, ADHD (maybe even a form of autism?), OCD hoarding –just from the limited knowledge I have. Since I spent very little time with her as an adult, this is mostly based on my memories of her as a child. Even in the 2000s when my mother was taking care of my grandmother, her doctors dismissed her symptoms and didn’t take it seriously. If they had taken it seriously, we may have discovered her cancer in time to save her life –but that is another story for another time.

Before Great Grandma died in the 1970s (when I was yet to be a gleam in my daddy’s eye), she bought Grandma a beautiful Civil War era house with a wrap around porch on a hill. It was certainly large enough to house my grandmother’s family of (by then) seven children.

In 1976, my mother visited my father, her then boyfriend, at this house. During the visit, their freezer died, and my mother assumed it would be dealt with.

But like many things, it was not.

By the time I knew Grandma, her house was full to the brim with stuff. So full of stuff that I don’t know what her house really looked like. All I could see was goat trails through piles. Even the outside of the house was cluttered and obscured with stuff.

In the 1990s, something got too close to the coal burning furnace in the basement, and that beautiful house burned to the ground nearly killing my grandfather who was sleeping on the fourth floor. That same fridge was still where it had died in December of 1976. It had never been cleaned out –never even opened I was told.

My grandmother moved a trailer onto the property with the intent of sorting through the rubble of the fire for her “treasures” that were in the fire. Due to her mental health issues or the physical health issues which restricted her movements, this sorting didn’t happen. She wouldn’t let people clean out the property. Even years later she complained about the things she hadn’t been able to save. What she did save was often ruined by water or smoke damage but it was still vital to her –absolutely essential to her that she had these things.

Eventually, the county forced them to sell the property and the debris from the house was cleaned up. What she had saved was moved into one of her children’s houses merely transferring her hoarding to a new location.

Unfortunately, the actual issue was not addressed.

What follows is my opinion based on conversations with my Grandmother when I was in high school (some of my family may or may not agree): My grandmother’s mother was an OCD clean-freak, critical of my unknown-then-probably ADHD (among other things) grandmother. My grandmother never learned to view possessions in a healthy way. She was forced to never keep anything –even special things– as a child, and she reacted as an adult by keeping everything.

This has been passed on to her kids, grandkids, and now great grandkids. It’s like our brains are wired to see possibilities and struggle to get rid of them. We make emotional connections to and plans for the things we possess. We can see the possibilities and struggle to look beyond that to the problems those possessions are causing in our lives.

I’ve read about epigenetic and how researchers believe that certain traumas in your family history can trigger a switch in your ancestors genetic make-up inclining you toward certain behavior or certain conditions.

Sarah Number Four

Hi, I am Sarah number four. Actually, I am Sarah number seven in our family according to my grandmother, but I am only including four of the Sarahs for the purpose of our story.

I am very much like my grandmother in many ways. I am gifted, artistic, and not naturally organized –totally ADHD. I look like her, even down to the same weight problems she had. I love dresses and long hair, just like she did. My aunt likes to remind me how much I look like Grandma. We have many of the same health problems, likely a result of shared genetics.

I recognized this struggle with possessions in myself in my early twenties.

I didn’t want to copy the same mistakes that my grandmother had made. I wanted to make wiser, better choices about my possessions.

I don’t want my possessions to rule my life.

So, I started actively working on my own view of possessions until I could get rid of things. More than once, I cleaned everything surplus out of my house –then I would relapse due to my illness. So, I would clean it all out again. At one time, I hauled 3 truckloads of craft and art supplies out of my garage to the local thrift store.

It took a few years of forcing myself to face this issue and my approach to possessions before I saw real progress.

The first few times, I will be honest –it was really hard. I had plans for those things when I bought them. But, my ideas are always greater than my time and my energy. Learning to accept reality was very important to my ability to part with my stuff and not bring more stuff into my home –as was dealing with my health and mental health issues (an option that was not available in my grandmother’s time).

Here is the reality: I will always have more ideas and plans than I have time and energy for. Once I accepted that as a fact, it made getting rid of things so much easier. Knowing that my ideas were greater than my ability to fulfill my ideas meant that I could put a priority on the things that were really important and get rid of the other things.

It was then that I started noticing this same hoarding tendency in my children.

I am fighting a multigenerational battle.

This battle –as far as I know– started with my great-grandmother and how she interacted with my grandmother and has been passed down from generation to generation.

Now, it’s passed to my children.

I am now fighting for my future grandchildren.

I am fighting to break a pattern of behavior that is neither healthy nor ideal. It is not what I want for my children and grandchildren.

Although sometimes due to my health and my inability to clean my house still resembles that of a hoarder, it is not because I cannot get rid of things.

I have learned to get rid of things.

At one point, a group of ladies came to help me clean out my house. In one day, we overhauled and cleaned out the whole house. I was getting rid of things hand-over-fist as fast as they could bring them to me.

For me, overcoming this need to have things just in case or because they were special, unique, or important to me came down to a few factors:

1) I’m a Christian. If I believe God will provide what I need then I don’t need to keep every little thing just in case. We need far fewer things than we think we need. Most of what we think of as needs are actually wants. I should be storing (hoarding) treasures in heaven not here on this earth.

2) There are very few things that are truly unique, and nearly everything I own could be bought again on Amazon or eBay if I truly and actually needed it. The toll of the possessions on my life is not worth keeping things just so I feel like I have been frugal.

3) Our things must fit in our space. If they don’t, we are not good stewards of our space. Our space –such as our homes– is also something God has given us. If things don’t fit in our space, it makes everyone miserable.

4) Even if I saved it for later, if I can’t manage my stuff, then even when I need it, I will not be able to find it, in which case I have wasted the storage space and my time.

5) I decided that people were more important than things. If I am choosing to fill up my home with things, to make my home unsafe for my children, to force my children and husband to work around my possessions that I refuse to get rid of, I have prioritized things over people –over my own family. I cannot do this in good conscience.

6) I decided I was not bringing new things into our house unless they were necessary. If I have the mindset that I am not bringing new things into the house, it saves me a lot of hassle. My first answer is “No new things.” If we actually need new things, I can adjust. But, assuming I will not bring new things into the home helps keep me from the mindset of always collecting new things. It was a change in the way that I think about possessions.

With the intent of teaching my children to not cling to possessions too tightly, I have begun to embrace minimalism. Not entirely –because I still have way too much stuff, but I have found the idea of not having more than we need very helpful.

I have worked really hard with my children on this issue. We have discussed at length –with kindness and understanding as well as honesty– about my grandmother’s issues.

I remember how traumatic it was when I came home from school at age five and many of my favorite things were gone. I know my mother meant to help, however, it made me cling to things more tightly. I do not force my children to get rid of things. Instead, we discuss what’s needed, why we keep things, the nature of possessions and how they can possess us if we aren’t careful. I’m trying to teach them how to get rid of things. How to be rational about possessions.

They have a drawer in their dresser that they can keep special things in and a box on their school shelf for special papers. When the box is full, they have to choose what to keep. Sometimes, we photograph special items and save the photo if we have to get rid of the item. I try to treat them –and their feelings– with respect. As an adult, their things may not seem important to me, but it is very important to them. If I want them to value what I value, I need to be willing to value what is important to them.

I’m not going to lie and say that this is an easy topic. It’s not. I’m fighting generations of genetics that incline us to certain behaviors.

I don’t get rid of everything. For instance, I have never gotten rid of one piece of my art. Somethings are important to keep.

With my children, I have decided to pick my battles, to be more concerned about if they’re learning to be discerning than if they get rid of every little thing.

It’s a journey.

One that I’m still on.

But I know there’s hope because I can see how much I’ve improved. I can see how much my children have improved.

I have learned to be thankful for what I have and thankful to have just what I need instead of clinging to everything for the one-day-plans that I had. Being thankful has greatly improved my outlook on things! If I’m thankful for what I have I’m less likely to feel the need to acquire more.

I posted a version of this article on one of my facebook groups and inspired a self-proclaimed hoarder to start cleaning her house. So, I am posting it here, honestly and plainly, in hopes that it will help and inspire others.

I do not claim to have conquered this area — on the contrary, it may be something I struggle with for my whole life.

But, if you struggle with it, you are not alone. There is hope. There is progress. It can get better. The first step, in my experience, is to get a proper diagnosis. A lot of hoarding is a result of unaddressed anxiety. You can’t help what you don’t understand. Thankfully, unlike in my grandmother’s day, there are doctors who will listen to women and treat them.

Be your own advocate.

Fight for yourself, for your family, for your future.

Your choices now don’t just affect you: they affect the generations to come.

Blessings,

Sarah Forbes

P.S. To any of my family who reads this, please give me grace as I tried to deal with this topic as graciously and honestly as I could.

If you found this post helpful, I would be honored if you would share it. 

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ADHD

How To Get an ADHD Diagnosis

If you are an adult who thinks you have ADHD or if you are the parent of a child who you think has ADHD, where do you begin? How do you go about getting a diagnosis?

Caveat: Because I live in the USA, this will be written from the perspective of someone using our medical system here in the US. If you live in a different country, you may have to go about getting your diagnosis in a different way.

First of all, look up ADHD symptoms online and write down every symptom that you or your child has. Check multiple web pages, because one webpage may only list hyperactive type or another might only focus on inattentive type.

If you or your child are female, I recommend looking for pages that list women’s and girl’s symptoms specifically, because the ADHD often manifests itself differently in women and girls who are much less likely to get a diagnosis than boys are.

Write down any and all symptoms.

If the list is for you, an adult, write down any symptoms you had as a child on a separate list. Ask an adult who knew you as a child, if possible. I was surprised to find that my mom remembered me having anxiety as a child when I did not remember, for example.

Go to your primary care doctor and request a physical –a full blood panel including thyroid– and a sleep test. You want to rule out other conditions that could be mimicking the ADHD before you pursue a diagnosis. I would also recommend food allergy testing as some ADHD people find that their symptoms go almost entirely away when they remove trigger foods from their diets. Unfortunately, our PCP refused to do allergy testing for me when I requested it.

I recommend at least thyroid blood tests even on children because many times thyroid problems in children go unaddressed because doctors assume they are too young for thyroid problems. That is a misnomer. Children can have thyroid problems, especially if endocrine problems run in their family. Many ADHD people –including children– have sleep problems which exasperate their ADHD symptoms.

If your bloodwork and sleep test come back normal, or if you are already medicated for a condition such a low thyroid or sleep apnea and are still experiencing ADHD symptoms, I recommend contacting a mental health professional.

Depending on your healthcare plan you may need to go to your primary care doctor first and get a referral to a psychologist. Call the psychologist before setting up the appointment to make sure that this doctor knows about ADHD.

Here is an unfortunate reality: even many mental health professionals do not understand ADHD and do not believe it is real.

ADHD is very complicated. For this reason, it is best if you do not see a primary care physician or a regular pediatrician for ADHD diagnosis and treatment.

Mental health professionals that I would recommend seeing for ADHD diagnosis:

  • Mental Health Nurse Practitioner
  • Psychologist
  • Psychiatrist
  • Developmental pediatrician
  • Neurologist

As I mentioned before, I recommend calling before you set up an appointment –even if it is with a referred doctor.

You want to find out what percent of the doctor’s clients have ADHD and what percent of the doctor’s clients are adults with ADHD.

The reason the percentage of adults matters is that –while children may have no choice as to where their parents take them for treatment– adults do have a choice. ADHD adults have a low tolerance for nonsense and are unlikely to tolerate subpar treatment. If they have adults with ADHD in their care, it is likely that the care will be better quality.

When you go in for the appointment, bring your list of symptoms that you made.

Here are some warning signs to watch for:

  • The doctor prescribes medication without a formal diagnosis.
  • The doctor doesn’t believe in ADHD and refuses to test you.
  • The doctor tries to give the computer-based child’s test to an adult.
  • The doctor refuses to test if the child isn’t struggling with his grades in school.
  • The doctor always only uses one kind of medication to treat ADHD and won’t even discuss other options.
  • The doctor refuses to test for ADHD because he blames the symptoms on the parent’s: parenting style, homeschooling, divorce, low income, etc.
  • The doctor patronizes or dismisses the parents’ concerns because he or she is the expert.
  • The doctor refuses to prescribe ADHD medication but will only give antidepressants.

(The last may be necessary with a young child, but it is common for a doctor to diagnose ADHD adults with depression instead of ADHD. The antidepressants just made me not care that my life was falling apart. It didn’t help my ADHD at all.)

The standard way to test for ADHD, in my experience, is via a set of questionnaires that are filled out by 3 adults in the child’s life –often the parents, a teacher, and an additional adult. If you homeschool, you can have one parent fill out one set, and the other parent the second. We had my children’s questionnaires filled out by one of their grandmothers, a Sunday school teacher, and me. Anyone who works with the child should be able to fill out the form.

Don’t listen to a doctor who says you cannot get a diagnosis if the child is homeschooled or that homeschool children do not have ADHD. That belief represents a misunderstanding of how ADHD works –the causes and severity of ADHD– and you do not need that kind of negativity. Get a new doctor.

Although each doctor has a different way that they go about diagnosis, since the paperwork style evaluation seems to be the most common, that is what I am describing. If you see a doctor who does brain scans and more detailed testing, that is awesome, too.

When you bring the paperwork back, the doctor will evaluate the results and usually interview the child. Our psychologist talked to our children while playing board games, so it was not stressful for the child at all. I recommend cognitive behavioral therapy, too, if you can find someone who really understands ADHD. It can be very helpful if you find someone who actually understands ADHD.

Regardless of how the results of the ADHD screening test come back –whether yes or no to the ADHD diagnosis– I recommend that you get a full psychological evaluation done next. Some doctors will allow you to skip the ADHD screening and go straight to a full psych eval. Other doctors will not.

If you suspected ADHD and the test came back negative, then what else is going on that made you think ADHD? Could it be bipolar? Oppositional Defiance Disorder? Something else? A full psych eval will tell you.

If you got a positive ADHD diagnosis, now you need to know what other mental health conditions the child has. 50% of people with ADHD have an additional psychiatric condition. Those conditions can significantly complicate the treatment of the ADHD even if you choose not to medicate. Either way –medication or not– you need to know what is going on so you can help your child or yourself.

A full psychological evaluation is worth every penny even if your insurance will not cover it. It could save you from tons of heartache later, such as when you try to medicate the ADHD with a stimulant and find your child in fetal position in the living room floor having panic attacks for hours or days and unable to function because he has a separate anxiety disorder that was just made significantly worse by a stimulant. This is a true story. This is why you need to know about the comorbidities.

Another example: if you have bipolar, going on a stimulant can send you manic –something you really don’t want to happen. Another reason for a full psych eval.

Maybe your child doesn’t have comorbidities, but you need to know for sure before pursuing treatment of any kind.

Dr. Russell Barkley explains (in the video series that I recommend every person with ADHD or parent of an ADHD child watch) that ADHD is a neurogenetic disorder –ie a genetic disorder affecting the brain. ADHD medication is a neurogenetic treatment. It fixes the problem cause in the brain by the genetics.

Since ADHD is genetic, there is a genetic test –called Genesite— available which will tell you based on your genetics which medication will work to treat your ADHD. I wish such a thing had been available when my children were trying medications! The cost varies based on what percentage your insurance will pay. I have heard prices from free all the way up to $350. But, it is definitely worth asking your doctor about.

If you have a child with ADHD, do not be surprised if the doctor wishes to evaluate you and the child’s other parent as well. ADHD is genetic and runs in families. This means that there is a high probability that you or the other parent have ADHD. Since 20% of adults with ADHD do not get diagnosed and treated, doctors try to make sure the parents have access to answers. Also, 50% of people with ADHD who take ADHD medications are able to function like a completely neurotypical person, and 80% see improvement in their condition. According to Dr. Barkley, ADHD is the most treatable condition in psychiatry. The doctor would be remiss in his duties if he didn’t at least bring it to the attention of the potentially-ADHD parent(s).

Medication for ADHD is tricky –especially when comorbidities are involved. This is why a trained mental health professional and not just a general practitioner is so important. Dosing medications, knowing side effects, and having experience with multiple medications and how they interact are all things that you get when you opt for a mental health professional.

It is unreasonable to expect your primary care physician to stay up-to-date on all the various special conditions that his clients have. He undoubtedly does not have the time to dedicate to educating himself on the complexities of ADHD in addition to all his other duties as a doctor. It is really unfair to expect him to –this is why we have specialists like mental health professionals. I do know some people who have had good luck with primary care physicians, but these are usually people who have only ADHD and no comorbidities.

How complicated is ADHD to treat by itself? Well, one researcher proposed that ADHD should be divided into different categories based on how the executive function issues affect the person with ADHD. He came up with 36 different kinds of ADHD based on the different executive function deficits. His proposal was rejected because of its complexity, but it goes to show how complicated and varied ADHD is. This is why one medication will not work for everyone with ADHD and why one medication works great for one person but will not work for another.

You need to be treated by someone who understands the complexity of ADHD –not someone who thinks all ADHD people look like Tigger from Winnie the Pooh (yes, a doctor actually told me that).

When you begin medication, you can use this chart to evaluate your child’s symptoms and see if the symptoms have improved on the medication.

Never hesitate to fire a doctor who will not listen to you, dismisses you, belittles you, ignores your or otherwise marginalizes your opinions. If you are the parent, you should not be treated like you are not important. If you are the patient, you know yourself better than anyone else. Don’t let an arrogant doctor undermine your confidence.

The first mental health nurse practitioner we saw for our children was a nightmare. She treated me like I was an idiot –the patronizing should have been a warning to me (but she came highly recommended). She only used one medication to treat children and wouldn’t even consider any other options. She refused to treat my children’s comorbidities even though we had the results of a full psych eval showing that there were other conditions which needed to be treated. It was horrible, and some of the worst few days of my entire life were while he was on that medication that she claimed: “always worked for ADHD.”

I fired her and found a new doctor. It was the best choice I could have made –I wish I had made it the first time I had doubts about her. My son’s experience on that medication was so traumatic that he actually blocked them out and has no memory of them.

Advocate for yourself.

Advocate for your child.

And don’t stop advocating until you get the answers you are looking for and the treatment you need.

Keep looking for a doctor who will listen to you. I went through six doctors in about five years trying to find someone who would just diagnose me with adult ADHD. I have no regrets about firing doctors and moving on to the next until I found someone who actually knew how to diagnose ADHD in adults.

The diagnosis was life-changing even though I am not medicated. Just understanding that my brain is different has been so impactful in my life that I lack the words to accurately articulate it.

I am not broken.

It is not my fault.

I have a unique brain that works differently –and I have discovered that along with that different, abnormal, unconventional brain comes beauty that I couldn’t see until I stopped shaming myself for all the things I thought I should be but couldn’t.

I found answers to questions I had been asking my whole life.

I found beauty in the ashes.

Blessings,

Sarah Forbes

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