A Guide to Living with Someone with OCD
OCD is an oft-stereotyped disease that paints a much different picture than what movies and everyday comments suggest. Despite public perception, OCD is not a disease marked by a preference for organization or a desire to keep a kitchen floor clean and polished. In fact, OCD is not driven by preference or desire at all. Rather, it’s driven by anxiety.
The hallmark of OCD is intrusive thoughts that terrify the sufferer and lead the sufferer to engage in compulsions that neutralize their fear. These thoughts are egodystonic, which means they go against the sufferer’s innate values. They’re also more than meets the eye.
For example, Contamination OCD is among the most common types and sufferers of it routinely clean and organize as a way to manage their felt dysregulation. But the idea that the bathroom counters are dirty is not the true intrusive thought. Instead, their OCD tells them that something bad will happen because the bathroom counters are dirty. It might tell them that their mother will be killed in a car accident or that a plane will crash unless they grab a rag and clean up. Or it might not tell them anything specific, and rather present as a felt sense that something vague, but terrible, will happen if they don’t wipe down the granite.
This is where the egodystonia comes in: The ideas of their mother dying in a car accident, a plane crashing, or anything terrible happening are opposite of the sufferer’s true desires. And that’s why OCD thoughts provoke such terror.
The OCD Cycle
Annoyingly, the relief is short-lived: As anyone with the disease can attest, OCD is never satisfied. Once the intrusive thought happens again (either the same thought or a new one), the anxiety returns, and the sufferer once again engages in a compulsion.
The true danger of the compulsion is that it “locks in” the thought and validates the OCD – the compulsions tells the sufferer, “Your intrusive thoughts are important and meaningful,” and this makes the disorder worse. OCD can’t survive unless the sufferer engages in compulsions (either obvious physical ones or invisible mental ones that happen in Pure O OCD).
The Concept of Intrusive Thoughts
Intrusive thoughts are not exclusive to OCD: They’re present in a variety of mental health disorders but also common in the general population. Per reports, it’s believed that around 85% of people experience intrusive thoughts at one time or another. True to their name, these thoughts intrude into the mind, unwelcome and unwanted.
The difference between the normal brain and the brain of the OCD sufferer is the normal brain sees intrusive thoughts for the nonsense that they are while the OCD sufferer gives these thoughts credence. Giving the thoughts power makes them happen more, which is why OCD sufferers experience intrusive thoughts frequently or even constantly.
One of the most oft-used ways to describe the concept (the concept of giving meaning to something meaningless) is with the example of email. In the normal brain, the intrusive thoughts are sent to the spam folder where they’re easily disregarded and deleted, becoming non-issues in the process. In the OCD brain, the intrusive thoughts land in the inbox, at the top where they’re starred and marked important. Essentially, the OCD sufferer has a brain without a spam filter.
In reality, intrusive thoughts don’t mean anything – they’re nonsensical and worthy of dismissal. But the OCD sufferer buys into their thoughts, which is why they react to them.
The content of the intrusive thoughts is not important from a technical standpoint – the thought is a throwaway regardless of its theme. However, the content does dictate what type of OCD the sufferer has.
For example, someone whose intrusive thoughts involve the fear that touching a doorknob will expose them to HIV is suffering from Contamination OCD. Someone whose intrusive thoughts involve the fear that their spouse will leave them if they’re not perfect every moment of every day is suffering from Relationship OCD. Someone whose intrusive thoughts involve the fear that they will run someone over while driving to the grocery store is suffering from Harm OCD. Someone whose intrusive thoughts involve the fear that they will molest a child is suffering from Pedophilia OCD.
In theory, a sufferer can have OCD about anything, but some types are common. A sufferer can suffer from more than one type of OCD as well.
From a clinical perspective, the flavor of the thoughts isn’t important; as mentioned above, all OCD thoughts have one vital thing in common: They’re meaningless. Still, some types of OCD, such as Harm OCD and Pedophilia OCD, involve very potent shame. And it’s usually helpful to the sufferer if the challenges of this shame are addressed during treatment.
It’s also especially vital that people understand that intrusive thoughts are egodystonic and not a reflection of the sufferer’s desires or values. In truth, they are exactly opposite of what the sufferer wants.
For therapists, making this distinction is extraordinarily crucial when working with Harm OCD or Pedophilia OCD. The Harm OCD sufferer has no desire to inflict harm just as the Pedophilia OCD sufferer has no sexual attraction to children. And the Harm OCD sufferer and Pedophilia OCD sufferer never act on their obsessions; they only fear they will.
Where Uncertainty Comes In
OCD is a mental illness where sufferers are aware that they’re being irrational. The sufferer who has checked the front door eight times to make sure it’s locked knows, deep down, that it’s locked. But OCD feeds and feasts on the discomfort of uncertainty, demanding that the sufferer is 100% sure at all times. Even 99% sure is not enough.
OCD is described as the “doubting disease” because of its affinity for the certain. It pesters and prods the sufferer with repeated questions of “What if?” and uses the elusiveness of 100% certainty to survive. Because, when it comes down to it, being 100% certain about anything is often impossible.
Worth mentioning, people with OCD can handle uncertainty in other areas of their lives. Someone with OCD who is up for a big promotion but hasn’t yet heard of the decision or someone with OCD who isn’t entirely sure they shut their living room window may be fine not knowing.
Someone with OCD may also be unconcerned with the most-anxiety provoking thoughts of other flavors. For example, someone who has Harm OCD but not Contamination OCD will touch a doorknob without thinking anything of it. It is within the context of their own OCD that the “not knowing” becomes overwhelming and insufferable.
This need for certainty is perpetuated by dysfunctional beliefs. In general, people with OCD exhibit several characteristics that lead to these beliefs, including:
Thought-Action Fusion: Thought-Action Fusion is sometimes called “Magical Thinking,” a description cloaked in accuracy that describes it for what it truly is.
In essence, Thought-Action Fusion/Magical Thinking is the idea that thinking something is the same as doing it or that something can happen just because you thought of it.
For instance, someone with Harm OCD who experiences an intrusive thought of stabbing their sister will fuse the thought and action together, questioning whether or not they really stabbed their sister just because they experienced the thought.
This Magical Thinking only applies to OCD thoughts; the OCD sufferer doesn’t believe that simply thinking about winning the lottery will cause them to win it.
An Overemphasized Sense of Responsibility: OCD sufferers feel as though they’re responsible for things well outside their true realm of duty. They assume that if they don’t act on their compulsions and something bad happens, it’ll be their fault.
For example, an OCD sufferer may see a tree branch on a bike trail directly in the way of the path, label it an accident hazard, dismount, and remove it from the trail. But moving the actual hazard isn’t enough for the OCD – it’ll then tell the sufferer to remove any theoretical hazard; if they don’t, someone will get into an accident. This process snowballs quickly, leaving the sufferer picking up every branch, rock, or leaf in sight and turning their one-hour bike ride into a three-hour “rescue” mission.
Overestimation of Threats: The OCD mind is incredibly creative and can find threat in virtually anything. In keeping with the example above, a rock on a bike path is theoretically hazardous to a biker who goes over it directly or at the right angle or veers suddenly and loses control (assuming the rock is large and burdensome enough, anyway). But the OCD mind takes a theoretical risk and makes it an actual one, turning the possible into the probable and then a sure thing.
Not only that, but the OCD mind overestimates potential damage. A bike rider who wrecks on a trail is most likely to experience a few bumps, bruises, and scrapes. But the OCD sufferer fears much worse – serious injury or death. The OCD mind doesn’t typically have time for minor injury: It’s too busy being manipulated by the tragic.
Perfectionism: Perfectionism, like intrusive thoughts, is not unique to OCD – overall, about one third of the US population identifies as perfectionists whereas, by comparison, only 2.5% of the US population has OCD. Still, OCD sufferers often exhibit perfectionist-like tendencies.
In most cases, this perfectionism is imposed on self and the sufferer is very critical of their own actions, behaviors, thoughts, or flaws. They believe they have to be perfect, even when allowing, often liberally, others to be human.
A Desire to Control Thoughts: In the past, OCD was treated with the idea of “thought-stopping,” a method that involved tactics like the sufferer wearing a rubber band on their wrist and snapping the rubber band whenever their intrusive thought surfaced. This form of treatment made sufferers worse as it reinforced the misconception that people can control their thoughts.
Those with OCD desire this, naturally; if they could control their thoughts, they would no longer suffer from intrusions and their OCD would disappear. Yet no one can control their thoughts, mental illness or not. Conversely, attempting this control brings those thoughts to the forefront as it’s impossible to tell yourself not to think about something without actually thinking of it. Try it out: Tell yourself not to think of a lion riding a unicycle. What comes to mind? A feline with an impressive sense of balance.
OCD versus OCPD
One of the most common errors people make in understanding OCD is mixing up Obsessive Compulsive Disorder (OCD) and Obsessive Compulsive Personality Disorder (OCPD). While their similar names don’t offer any favors around clarification, OCD and OCPD are not the same thing. Interestingly, some of the most prevalent stereotypes about OCD (that sufferers are anal-retentive, particular, deeply ingrained in their personal preferences for order or organization, rigid) actually apply to OCPD instead.
Some of the most important differences include:
- OCD is an anxiety disorder while OCPD is a personality disorder.
- OCD is marked by fear and anxiety while OCPD is marked by preferred standards surrounding things like perfectionism, order, and tidiness.
- OCD involves obsessions and neutralizing compulsions while OCPD does not involve obsessions or neutralizing compulsions.
- People with OCD experience distress as a result of their thoughts (and often shame when engaging in their compulsions) while people with OCPD believe their way of doing things is the right way.
- People with OCD may be inflexible if they’re trying to engage in compulsions but their personalities are not generally rigid otherwise. People with OCPD tend to be very inflexible.
- People with OCD are typically open to seeking help as they see their behaviors as irrational and they want their anxiety to go away. People with OCPD do not see their behaviors as irrational and, thus, may see no need for help.
- OCD symptoms tend to ebb and flow (usually dictated by underlying stress) while OCPD symptoms persist.
There is some overlap in the essence of the disorder: Both OCD and OCPD involve doubt, control, and conscientiousness. But, because they require different treatment, distinguishing the two is instrumental. In some cases, it’s possible for a person to suffer from OCD and OCPD concurrently.
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Recognizing the Signs of OCD
Now that you’re aware of what OCD involves, how do you know if your family member suffers from it (assuming they’re not already diagnosed, of course)? It’s not easy, in part because people with OCD are very good at hiding their compulsions and creative in the lengths they’ll go to disguise their irrational behavior.
Even so, there are common signs to look for, including:
- Behavioral changes that first appear between the ages of 8-12 or around 19-21 (while OCD can manifest at any time, it most commonly appears during these two periods).
- Disappearing for long periods of time without explanation (or an explanation that doesn’t make sense) or spending hours alone.
- Spending a significant amount of time performing everyday tasks (such as getting dressed, driving to the store, or taking the dog for a walk).
- Engaging in repetitive behaviors that cause the sufferer to do things over and over again.
- Being consistently late for school, work, or events.
- Asking for reassurance on a constant basis or always questioning their own decisions.
- Growing preoccupied with minor details or growing emotional over things that seem insignificant.
- Sleeping more or less or eating more or less.
- Avoiding things, such as public restrooms or driving.
- Experiencing mood swings and an increase in irritability.
- Engaging in behaviors that are nonsensical or irrational.
One of the reasons family members miss the signs of OCD is because they’re looking for stereotypical signals, such as frequent handwashing or repeated organizing. But, as addressed previously, OCD comes in a myriad of flavors.
Those who suffer from types outside of Contamination OCD won’t exhibit the commonly looked for clues. They won’t compulsively wash their hands or organize their closet. Conversely, they may be total slobs (not because of OCD, but because that’s their personality).
It’s important to remember that the Hollywood representations of OCD aren’t always accurate and that the people who claim to be “so OCD” aren’t usually OCD at all. Recognizing these misconceptions allows you to better recognize the legitimate signals.
The Most Common Familial Mistakes
Familial mistakes are common – OCD is not an easy disease to have nor an easy disease to navigate when the sufferer is a loved one. Once you know the most common mistakes, you can better sidestep those mistakes and position yourself as an ally in the struggle.
Mistakes tend to start with not realizing there’s a problem.
Denial of Disease is Denial of Help
Denial of the disease doesn’t always mean consciously denying that there is an issue. Often, people are simply unaware of the signals pointing to an underlying disorder. It’s common for family members to explain symptoms away as personality quirks or label their loved one as being a little weird. They may also chalk the symptoms up to a phase, especially if their family member is a teenager and hormones make phases commonplace.
Sometimes, people see their family member as irrational and acknowledge that a problem exists. But they may fail to see the seriousness of the problem, believing instead that it can be addressed by getting more sleep or eating less sugar.
A failure to recognize the symptoms of OCD or to recognize OCD as a serious disease results in a failure to get help. And that all but assures that OCD will get worse.
Enabling the Sufferer
Perhaps the most common mistake made by family members of OCD sufferers is enabling the sufferer, which enables the disease. This most often manifests as inadvertently helping the sufferer perform their compulsions.
The reason this impacts the disorder so negatively is because compulsions, whether performed by the sufferer or someone they’ve recruited, keep OCD at the forefront. The only way to truly treat the disease is to avoid the compulsions. Once that happens, OCD begins to fade.
Not that it’s easy! On the contrary, stopping compulsions is extraordinarily challenging for the sufferer as it requires them to sit with their doubt and uncertainty, two things that cause overwhelming anxiety. And this makes stopping the compulsions difficult for family members too – they see their loved one in pain and they want to stop their pain. Thus, they help engage in the compulsion to provide their loved one relief.
This engagement does provide temporary reprieve, but that’s all it is: A short-term fix with long-term damage. The anxiety returns, usually rather quickly, resulting in the need to do another compulsion. This is why breaking the cycle is so vital: Continuing with compulsions only validates the intrusive thoughts, allowing OCD to strengthen its grasp on those who have it.
Sometimes, family members are aware that they’re taking part in compulsions; other times, they’re unwitting participants. The latter requires proactivity on your part, as the OCD sufferer may compel you into partnering in their compulsions without you realizing it. As acknowledged above, people with OCD tend to be extremely clever about performing their rituals and soliciting others to help.
Some of the things to avoid include:
- Reassurance (asking for reassurance may be the biggest way OCD sufferers involve their family members in their compulsions).
- Irrational lifestyle changes (for example, someone with Contamination OCD may insist that their family members never use the downstairs bathroom so that they can have it all to themselves).
- Avoidance behaviors (for example, someone with Harm OCD may always ask a family member to drive them, fearing they’ll run someone over if they’re behind the wheel).
- Overt participation (actively performing the ritual alongside the sufferer or as a substitute for the sufferer).
- Denial (this acts as a form of enablement by failing to address the disorder).
Another common mistake is criticizing the sufferer for performing their compulsions. This might be done out of frustration or out of love, as the family member believes their criticism will get the OCD sufferer to stop their rituals. But any sort of blame or shame only makes OCD worse. And criticism never ends up acting as a solution for ritual prevention.
OCD ebbs and flows in severity, but underlying stress nearly always strengthens the disorder. Because criticism undoubtedly causes heightened stress, it worsens OCD as well. Any time OCD worsens, even if that worsening is short-lived, it gets locked in further and forces the sufferer to take several steps back in regard to their healing.
In essence, the more ashamed someone with OCD feels, the longer their disorder might last and the worse it might get.
OCD is a disease and it needs to be treated as such. Odds are high that you’d never criticize a loved one for having asthma or a heart defect – this is no different. Approaching OCD from this standpoint is key, as it arms you with the empathy and the patience you need.
Remember, your loved one didn’t do anything to get OCD – they didn’t chain smoke or drink too much alcohol or eat way too much chocolate cake. It’s a neurobiological disorder that happens as a result of several complicating factors outside of the sufferer’s control, including genetics, problems with communication in the brain, structural abnormalities in the brain, and lower levels of serotonin.
What You Can Do to Help
Ah, the moment you’ve been waiting for: What are the steps you should take to help your loved one suffering from OCD? Reading this article is one step – congrats! You’re already on the right path! But there’s much more to address.
Understanding OCD is crucial for anyone who wants to act as an ally. It may be best to approach your understanding with a clean slate, throwing out everything you think you know about the disorder. The vast majority of what society believes OCD to be is wrong and minimizing.
When doing your research, keep the above in mind and stick to valid websites filled with concrete information. For instance, the International OCD Foundation is an excellent resource; a blog about organizing your pantry written by someone self-diagnosed with OCD is not.
Other websites worth checking out include:
Joining Support Groups
There are several support groups for people with OCD as well as their family members. A quick Google search reveals a variety of choices, from those that meet in-person to those that meet online. Some are formal, with weekly get-togethers and set structures; they’re often conducted by professionals well-versed in OCD.
Others are much more casual and involve Facebook groups where people post questions and resources, chat, and seek support at will. Find whatever works the best for you.
Attending conferences isn’t always feasible due to financial, distance, or time constraints. But those who are able to go typically find that conferences are rewarding experiences. Not only do they provide family members a chance to deepen their understanding of OCD, but they also provide the opportunity to meet other families in the same position, bond, and form networks and support systems.
The most well-known OCD conference is the International OCD Conference, which takes place annually in late July or early August. It rotates US locations, popping up in a different city each year. However, the 2020 conference was held online due to the Coronavirus outbreak. It’s possible this may change formatting in the future and open the door to more virtual options.
Limiting Day-to-Day Stress
As previously mentioned, stress has the potential to exacerbate OCD symptoms and worsen the underlying disorder. Because of this, family members should try to keep day-to-day stress to a minimum. Keep in mind that the type of stress that worsens OCD isn’t always “bad”; even positive changes (such as getting married) can cause the illness to flare.
Families should not go to great lengths to make sure their homelife is Eden-like and void of anything and everything negative; that walks the line of enablement. But promoting an overall calm environment is beneficial to OCD as well as everything else.
Encouraging ERPs and Medication
Exposure Response Prevention (ERP) is the gold standard treatment for OCD. This method involves the sufferer exposing themselves to their distressing thought and then avoiding their compulsion. Because ERPs are extremely hard to do (as the anxiety overwhelms the OCD sufferer), medications are used to make the process easier.
Encouraging the sufferer to perform ERPs and take their prescribed medication encourages proper treatment. Still, not everyone is willing to do ERPs so other methods, such as Acceptance Therapy and Commitment (ACT), might be used as well. A thorough understanding of OCD empowers you to know all treatments available and advocate for your loved one accordingly.
Recognizing Small Improvements
OCD is not a disease that disappears overnight; conversely, it’s a life-long disorder. Even when OCD symptoms are controlled, the disease is not cured and has the potential to resurface at any time (which is why continuous vigilance is required).
Keep this in mind and practice patience. It’s not uncommon for OCD sufferers to make progress and then experience setbacks; it may sometimes be a one step forward, two steps back existence. But sticking with treatment does lead to positive change.
Try not to get discouraged – it sounds like a lot of pressure, but if family members get discouraged, the sufferer will follow suit. One way to avoid this is by recognizing even the smallest of steps.
For example, if someone with Harm OCD previously refused to drive at all and now drives once every few weeks, recognize that. The OCD is still preventing them from living a normal life but going from never driving to rarely driving is a step in the right direction.
OCD treatment is rarely fast and furious; instead, it’s the kind that would make the tortoise from Aesop’s fable proud: Slow and steady wins this race.
Forming a Partnership with a Therapist
If you’re a parent of a child who has OCD, or you’re involved in finding a therapist for your loved one, make sure the clinician you seek out is specifically trained in OCD. The importance of this can’t be emphasized enough.
Unfortunately, the misunderstandings of what OCD is aren’t only circulated among laypeople – they transfer to the clinical world, too. As a result, the stories of sufferers going to therapists who made them worse and left them traumatized are commonplace; all in all, it takes between fourteen and seventeen years on average to receive proper help. This is, in part, due to the OCD confusion among clinicians.
The best thing you can do is to find a therapist who doesn’t only treat OCD but specializes in it. The International OCD Foundation offers a directory of providers and allows you to search by zip code.
Once you find a good therapist and treatment begins, take an active part in the therapy. While this is easy to do if the sufferer is your child, adult sufferers will need to agree to your involvement. Many will, most likely, as the more people they have in their corner fighting the OCD monster, the better.